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I just finished reading all the postings on this board. I have a nephew who has downs. People wonder why these things happen. I know why God put Andrew on this earth. He is here to teach us all what good, true, uncolored love is. He is a sweet child, always loving, and never complains. He is 7 years old. He always has a kiss and hug for friends and strangers. People wonder how, and why a child may have downs. It is just a natural thing that happens. I hope that anyone reading this that may know they are carrying a child with downs and are having second thoughts, please, please let this child into your life. You will NEVER regret it. When I see Andrew, he reminds me of how blessed I am to have him in my life. You look at things differently when a child like Andy comes into your life. Everyone on this message board is truly blessed. Thank you!
My story I guess is still in the early stage or maybe I should say Nagawutteae's (naja-wu te-) story.She is a beatiful 2 1/2 month old angel.I had know idea of her situation until the minutes after her birth.It seemed odd because me and my wife were the only happy people in the room.The doctor was immediatley alerted by the shape of her eyes I tried to deny but all it took was one long look into her eyes and in my stomache and heart I knew the doctor was right.It seems as if nov 27 2000 is a never ending day for me because every day since has been a continuation there of.My angel is presently in the hospital recovering from a closed heart surgery t band her little heart,and as you all know she will need open heart surgery to completely repair the heart.Im realizing that time and love are a must for kids with down syndrome lucky for my baby her dad has plenty of both with some to spare.
HELLO EVERYONE AGAIN, WELL I THOUGHT IT WOULD BE APPROPRIATE TO LET EVERYONE ELSE ON THIS MESSAGE BOARD KNOW THAT MY DAUGHTER PASSED AWAY LAST THURSDAY. SHE HAD HEART SURGERY LAST WEDNESDAY AND MADE IT THROUGH THE SURGERY PERFECTLY. IT WAS THE RECOVERY I GUESS THAT DID IT TO HER. THE STATE IS NOW REQUIRING AN INVESTIGATION ON HER DEATH AND I AM VERY HAPPY ABOUT IT. I DO NOT BELIEVE THAT MY DAUGHTER DIED OF NATURAL CAUSES AND IF THE GOVERNEMENT WASN'T GOING TO DO ANTHING ABOUT HER DEATH I SURE WAS. WE HAD AN AUTOPSY DONE ONLY ON HER CHEST AREA TO FIND OUT IF SOMETHING WAS DONE TO HER THAT CAUSED HER DEATH. SHE WAS IMPROVING SO WELL AND THEN ALL OF A SUDDEN MY BABY WAS DEAD.WE ARE VERY UPSET AND DEPRESSED OVER EVERYTHING, BUT WE HAD OUR DAUGHTER CREMATED AND SHE WILL NOW SPEND THE REST OF HER DAYS SITTING ON MY DRESSER WITH ALL OF HER MEMORANDUMS THAN SITTING IN HER BED PLAYNG WITH HER TOYS AND PLAYING WITH ME. I MISS HER VERY MUCH AND WISH GOD WOULD GIVE HER BACK TO ME, BUT IT EITHER WAS HER TIME OR SOMETHING TOOK HER BEFORE IT WAS HER TIME. WE WILL FIND OUT SOON ENOUGH. ONE DAY GOD WILL GIVE ME ANOTHER BABY AND I DONT CARE TO KNOW IF THE NEXT ONE HAS DS OR NOT. EITHER WAY I WILL LOVE IT THE SAME AS ANY OTHER BABY.
My older sister has Down Syndrome, and she has been such a blessing for our family. She is the oldest of 7 siblings, and has molded all of our futures and lives. My sisters are Special Education teachers, and my father majored in Music Therapy for Special Education. I chose my husband and soulmate, due to the fact that my Down Syndrome sister reacted to him positively, and told me she liked him. I have the utmost respect for my mother, for getting up every morning at 6:AM and guiding my sister with her Daily Living Skills with preperation on route to school or workshop. My sister Juliet has brought out the goodness of all my friends and coworkers. She brings out the good in everyone. She has always greeted me with a warm smile, and makes my life a better place to be in. I absolutley adore her!
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SORRY I MEANT GREAT GRANDMOTHER OF DAYTON. MY DAUGHTER HIS GRANDMOTHER HAS HIM DURING WEEK THEN I TAKE HIM ON MY TWO DAYS OFF AND 4 DAYS OFF. THIS WAY WE BOTH HELP AND WE BOTH GET TO ENJOY AND SEE THE CHANGES IN HIM. IT IS A JOY TO SEE THE THINGS HE DOES AND NOBODY CAN EVER TAKE THOSE FEELINGS WE HAVE EVERYTIME HE MAKES AN ACCOMPLISHMENT. AND SOMETIMES I HAVE 3 DAY OFF.
I AM THE GRANDMOTHER OF DAYTON HOLLOBAUGH OF CHARLOTTE,NC. HE IS A BEAUTIFUL DOWN SYNDROME BABY 10 MONTHS OF AGE. HIS MOTHER WALKED OUT ON HIM RIGHT FROM THE BEGINNING. HIS DADDY,GRANDMOTHER AND I ARE RAISING HIM. HIS AUNTIE MARY FROM OIL CITY,PA PLAYED A BIG PART ALSO. SHE STAYED FOR 8 WKS AFTER HIS BIRTH AS HE WAS BAD. THEN HE HAD OPEN HEART SURG IN JULY. AND SHE WAS HERE FOR THAT. I GUESS DAYTON HE IS LUCKY TO HAVE SO MANY LOVE HIM AND WILLING TO TAKE CARE OF HIM. HE IS DOING GREAT. WE ALL KNOW IT IS A LONG ROAD AHEAD BUT WE WILL MAKE IT. HE IS DOING SO MANY FUNNY THINGS NOW. HE IS THE LOVE OF OUR LIVES. WE WERE BLESSED WITH THIS CHILD FOR A REASON. WE WERE TOLD THIS BABY WOULD JUST LAY THERE AND NOT DO ANYTHING WELL GUESS WHAT DRS ARE SHOCKED. HE MAY BE JUST MILD THEY SAID. WE THOUGHT IT WAS IF YOU WERE YOU WERE NO DEGREES BUT I GUESS WE WERE WRONG. THANK YOU GOD FOR OUR PRECIOUS BOY
To everyone who has addressed my son, myself and our family by posting on this site and to all of those who have sent me an e-mail, I want to say thank you. Each posting and each e-mail has been wonderful!To update you all. Cass is doing fine and baby Jacob is fine. They are still doing twice a week ultrasounds and other than the fact that Cass is gaining more fluid, everything looks fine. They told her yesterday that in a week from this Tuesday they will do a fluid reduction and a maturation test on Jacob's lungs( this is done with amniocentesis again). If the maturity test is good, they will take Cass off the magnesium IV and see what happens, possibly even induce labor if Jacob is in position, etc. We are excited and nervous at the same time. So, it is possible that my new grandson will be here in a couple of weeks, if she does not deliver on her own prior to that.
Today we are having her baby shower at the hospital. We were supposed to have it at my house the weekend she was admitted to the hospital.
In response to "Rick's" posting on this site, the facility Cass is in is noted for its NICU and level of outstanding care. My husband is a respiratory therapist himself and has worked at this facility, taking his turn in the NICU. He has always said that it is an excellent facility in terms of the care and attention these little guys receive as well as the technology and equiptment available. The only surgery that could not be done here is open-heart, in that case they would be sent to St. Louis. However, at this point, it does not look like Jacob has any life-threatening heart defects, understanding that further echos and testing when he is born will be done to reveal more. We do know that he weighs about 4 lbs 13 oz and seems to be very active and totally unconcerned about what is going on "out here".
Our anxiety is now caused by the waiting for his birth, praying he is able to thrive and getting this duodenal surgery behind us. Please keep us in your prayers and I will keep you all posted. This has been a wonderful thing, finding this web site and being able to talk to others. Thank you all again and God bless!
I wrote my story several days ago, but I have been reading all the other stories, you parents are doing so great with your children. I just thought I'd let you know m y feelings abouth the stories they all make me cry. It's nice that we can share stories about our babies. I just want to say God Bless each and every one of you, and you and your child our in our prayers. Teresa
This is a response to Trina Knight's posting about prenatal discovery of Down Syndrome. I am the father of 11-week-old Audrey. We learned she had DS several months before she was born. In hindsight, we're very glad we got the amnio and learned for sure, because we had time to adjust and learn more. Near the end of the pregnancy, the baby wasn't moving much so we went for a non-stress test. The baby was fine, but the technician said "by the way, you know your baby has an intestinal obstruction, don't you?" No, we didn't. Audrey was born the very next morning. She went straight to the neonatal intensive care unit (NICU), and had surgery to repair her duodenal atresia at 3 days old after being transferred to another hospital. It took a full month for her to recover and start gaining weight, but now she's a wonderful, healthy, fat baby who is fully recovered and loves to eat. So far her stomach works just as well as any baby's. Trina, your son and daughter-in-law should look into the level of facilities available at their birth hospital to make sure they have an adequate NICU, and whether they can do the surgery there. If not, and the nearest surgery-ready NICU is far away, consider having the baby at the hospital with the surgical NICU. But the transfer isn't too big a deal. The things that were toughest about the experience for me: not holding my new baby until the next morning, not being able to breastfeed her at first (and teaching her how later), seeing her with tubes down her throat and needles in her arms, spending her first Christmas in the hospital, waiting a whole month to take her home. The things that made it all worth it: she DID come home, she's quite healthy now, she's learned to switch between breast and bottle, which most normal babies can't even do, she's an incredibly laid back baby who almost never cries and already sleeps through the night, and she's completely adorable. We dressed her in a cute outfit and took her to a Mardis Gras parade, and even the sirens on the fire engines didn't phase her at all. She learned to sleep through all the noise and beeping machines in the NICU I guess. Good luck.
In 1988 I had a baby boy born with Down Sydrome. He was then dignosed with heart trouble. Then when they did the test they found out he had another sydrome called Kleinfelters(don't know if i Spelled it correct) He had trouble gaining weight for his heart surgery. He had his heart surgery a few months later. He did fine with his heart surgery,but a few days later when they where ready to take him off the breathing machine he came down with some kind of infection. His kdneys stopped and they hooked him up to a machine for his kidneys, but they just didn't work right. He started swelling and the docters could not get control of the infection. He died at the age of 5 months. He was a very special baby and I feel so blessed that I was his mother. He had down syndrome and kleinfelters.
Hi my name is Ashley Kensinger and I am doing a speech on downsydrome, and i was wondering if you could send me some more infrmation on downsyndrome? I would really appreciate it alot. I am doing my speech on downsyndrome, because downsyndrom is something that I have always had an interest in learning about. Thank You, Ashley Kensigner
Note to Rodney Hood and family. I just wanted to congratulate you on your coming child. I am very excited to know further details. I am a mother of one 14 months Son with Ds. It was shocking news when he got born, but somehow I knew before that my third child would be special in some way, I dont know why but I think God gave me some clues before his birth. I just know today that I only have to have faith in God and he is there always. Today I can say that I would not like to miss it to have this little cute boy in my life. He has been challenge like all other children are in diffrent way. He had one opperation in the summer and that one went very fine. It was a vascular ring that had to be reliese around his windpipe but he was very strong and brave. Amasingly he was all him self after 3 days. I think that my biggest fear when I gave birth to him was that he new something that I didnt know. I felt so shy of him that I would not be able to take care of a child like him. Well I tell you one thing. Today I feel so silly because he is as adorable like my to others and I just had to get to know him like the same when my first two got born. He is very sweet and me and my husbond really know who are the top of his world. It show in his smile and when he reaches out to be picked up, and he does that alot. I am praying for you and hope you little Rodney will be strong and healthy and active.
My little brother has down syndrome and kids use to make fun of him. My brother decided to do something about it. He beat up this 12th grader when he was in kindergarden.
To Rodney Hood, First off, let me say, congratulations!!!!! I have to say that I too have a child with DS. Her name is Cyndi and she will be 8 years old in May. I am pregnant with my 2nd child (who does not have DS) and am due in 7 weeks. My life with my little angel Cyndi is a totally separate story and separate post that I shall tell at another time. I wish to commend you on your positive attitude toward your soon to be new son, Jakey! It is very normal to have feelings of anger, robbery, and feeling crushed. I think that most of us on this forum can relate. I am so happy that you are looking at this as a positive thing. Yes, you and your wife were chosen, just like all of us! I look at it as "I must have done something right! For God has trusted me with one such as Cyndi!!" Yes, you will very soon find out that your mom was right, there is nothing wrong with him but something very right. We as DS parents are very fortunate to be able to view this wild crazy world at times throught the eyes of our DS children. This is a view not many get to witness. You will find more love, peace, and happiness because of him than you will ever know. Yes, challenges lie ahead, anything this important will. Yes, at times it will be hard and frustrating, but you all will grow and prevail because of them! Your son will still follow ou everywhere and here's a little secret: Because our children are extra special, we are forced to take notice in every little achievement, every milestone, and every step that not all parents notice and some tend to take for granted. Enjoy it!!!! I sure have!!! Every little thing that they do is an accomplishment. My own personal words to you are, from my experience, my daughter has made me a better person! She has taught me more about life, love, and happiness than I could ever teach her in a lifetime. God only gives these children to special parents. I am glad that you and your wife look at this as a gift!!!! Good luck to you both and have a happy and healthy delivery!! Keep us updated!!! We look forward to another little one! God Bless you!!!! Barbara
I misspelled my own e-mail addy. It is likwyd 10chun@aol.com. sorry for the inconvenience
Hello. My name is Rodney Hood. About two weeks ago, my wife and I found out that our son, Jacob, would be born with DS. Everyone was shocked to say the least. As a soon-to-be father, I have had to deal with a lot of anger over this. I have felt robbed and violated. At least that was the way I felt initially. I wanted so much to have a son to follow me everywhere I went. In the beginning, I was afraid that all of my dreams and aspirations for him were lost. I was crushed. Between feeling angry then guilty, heartbroken then elated, I found myself wanting very much to find out why. We, as a couple, had taken no risks during her pregnancy. I had to find out why. What I discovered is there is no reason. It is like God is saying that we are chosen to raise this little boy, our son. The hardest thing to deal with was the fact that he did not ask for any of this. He had done nothing wrong. However, my mother pointed out to me that he doesn't even know anything IS wrong. He is just waiting to be born. I have come to realize that there is a reason for everything. That sounds like another cliche, but it is true. After spending so much time online, researching and learning, I have come to understand one thing: Jacob has a challenge and that is all. He is still Jakey, as my mom calls him. Nothing has changed that. I just want to let everyone here know that everyone one of these letters have touched me and my family. I could not express how much each one of these letters has meant. Thank you. We will continue to keep everyone posted on Jacob's progress. God speed to everyone and again, thank you.
I am a soon-to-be grandmother of a little boy we have been told has DS. This is my son's child. My daughter-in-law is only 32 weeks along and is in the hospital where she has been for almost 2 weeks. We don't expect her to be discharged until Jacob is born. This whole thing started when daughter-in-law began having contractions about 2 weeks ago, that they could not control. She is not in true labor, as there are no cervical changes. When she was first admitted they said she was very dehydrated(which was reasonable as she had just had a viral illness), and that was what had starte these contractions. They hydrated her with IV fluids 3 times and sent her home. The contractions would start again in a few hours and she would go back to the hospital. The last time she presented there, they admitted her. That was on a Sunday. They started her on magnesium sulfate IV to control the contractions. They brought them down some, but never stopped them. On Monday evening they did an ultrasound in her room. I was at work still but my son was there and her parents were present. They were all excited about getting to see Jacob. Let me point out here that until now we had no idea that anything was wrong with Jacob. She had been having a wonderful, uneventful pregnancy. The technician doing the ultrasound became very quite and my son noticed that she kept measuring the baby's head. When asked if something was wrong, she said the doctor would talk to them. At that point a perinatologist (specialist) came in the room. He told my son and daughter-in-law that they needed to do an amniocentesis as it looked like the baby's head was too large and that his little fingers turned inward, but most importantly, there was an excessive amount of amniotic fluid. They proceeded right then with the amniocentesis and told the kids that the "preliminary results" would be available in 2-3 days. The more extensive "chromasome mapping" results would be available in 2-3 weeks. I arrived there from work 20 minutes after this had taken place, to find my son, daughter-in-law and her parents in shock and tears. The test results were back on the following Thursday. A very sweet doctor came into the room and very gently told her that there was a 95% chance that the baby she was carrying had DS. In the days that have followed, (only a little over a week now) we have been on a roller coaster ride of emotions. From disbelief to shock, anger, sadness, etc. Yesterday they were informed that the lab in California had called and that the chromasome mapping indicated trisomy 21, DS. When asked if it was standard trismoy 21, translocation DS or mosiac DS, they were told that the print out would be in in a couple of days and they would know more about that. In the meantime, she is still having contractions, they feel now that these are being caused by too much amniotic fluid. The excessive fluid is caused, they say, because Jacob is not swallowing. They have since discovered through ultrasound that Jacob has a duodenal atresia (obstruction) that will have to corrected surgical shortly after birth. Otherwise, he looks fine and is EXTREMELY active. They are now doing ultrasounds on her twice a week to monitor fluid levels and Jacob. They want her to get to 35 or 36 weeks, but I don't know if that is possible. Echocardiocram shows no hole in the heart, but will need to do another echo on him when he is born. We are hopeful about all of this, but in the meantime, we are as a family, trying to cope with this information, and learn as much as we can about DS. I know in my heart that Jacob will be beautiful and will be loved and cherished. Our family is large and loving. My husband and I have 5 kids and Jacob will be our 10th grandbaby. We are anxious, excited, afraid, you name it. I have been reading this wonderful site for 2-3 days now. Have not yet seen a story involving DS BEFORE the baby is born. Am interested in hearing from anyone with similar story. Good luck to you all and God bless. Will update you-all when Jacob arrives in the next few weeks!
Hello. My name is Yvonne Bernard. I'm 13 Years old. I want to tell you about a boy in my dance class that I take in school. One time, my teacher told us that we had to get dress and go in the auditorium so that we can practice before the show. Because we had to perform that day three times for other people. Then, the first group went and we, the others started to get bore because it wasn't our turn yet. We started talking and doing things that won't make us bore. I was sitting next to a boy named James. He's in the 6th grade and I'm in the 7th grade. I was really bore so I just started watching everybody. Suprisingly, James put his two feet on the back on his head (on the back neck), which later touch his hair. Then he put his hands on the floor and started swinging and swinging and swinging. I was really, very shock. I couldn't believe my eyes. I try to do that at home and I fell. That was the unbelievable thing that I saw in my life. And you never know because some peple might be able to do that.
HI, MY NAME IS MELISSA AND I AM 19 YEARS OLD. I JUST HAD A DAUGHTER, NAMED ADRIAN, WITH DOWN SYNDROME. SHEI S NOW 2 MONTHS OLD AND IS ABOUT TO GO THROUGH A DRAMATIC LIFE CHANGE. SHE IS HAVING HEART SURGERY NEXT WEDNESDAY. SHE HAS TWO HOLES IN HER HEART AND I WAS GIVEN A LIFE EXPECTANCY OF ABOUT 6 MONTHS IF ADRIAN DIDN'T HAVE THE HEART SURGERY.WHEN I WAS PREGNANT WE DIDN'T HAVE A TEST RUN TO SEE IF ADRIAN HAD DOWN SYNDROME BECAUSE I AM SO YOUNG IT IS REALLY LOOKED FOR. AT 19 YEARS OLD YOU DON'T THINK OF HAVING A CHILD WITH DOWN SYNDROME, AND NEITHER DOES THE DOCTORS, BUT HEY censored HAPPENS.
WHEN ADRIAN WAS BORN BY EMERGENCY C-SECTION I WAS PUT OUT SO I DIDN'T GET TO SEE HER WHEN SHE WAS BORN. SHE WAS RUSHED DIRECTLY OUT OF THE ROOM (I KNOW THIS CAUSE MY HUSBAND TOLD ME) AND TAKEN TO ICU. SHE WAS DIGAGNOSED WITH DOWN SYNDROME AND A CONGENITVE HEART DEFECT. SHE WAS IMEDIATELY SENT TO THE CHILDREN'S HOSPITAL IN DALLAS WHEN SHE WAS ONLY ABOUT 5 HOURS OLD. I GOT TO SEE HER FOR 5 MINUTES AND THEN SHE WAS GONE. MY HUSBAND FLEW WITH HER TO THE HOSPITAL AND THERE I WAS ALONE WITH NO BABY. EVERYTIME I SAW SOMEONE WITH A BABY I STARTED TO CRY AND THEY WOULD ASK ME WHERE MY BABY WAS AND IT JUST MADE THINGS WORSE. THAT NIGHT A PREACHER FRIEND OF MINE CAME TO SEE ME AND WE HAD A LONG PRAYER TO HELP MY SWEET LITTLE ANGEL SURVIVE. I STAYED IN THE HOSPITAL FOR 5 DAYS AND THEN IMMEDIATELY WHEN I COULD WALK BETTER I WENT TO SEE MY DAUGHTER. SHE WAS SO SMALL AND WAS CONSIDERED TO BE A PREMIE. SHE WASN'T BELIEVE ME. SHE HAD WHAT THE DOCTORS CALLED ALL THE SIGNS OF DOWN SYNDROME, BUT 90% OF THEM HER DADDY HAD TOO. I WAS GOING TO RULE IT OUT AS DOWN'S EITHER.
WHEN WE GOT HER HOME A FEW DAYS LATER, I NOTICED SHE HAD APPOINTMENTS HERE THERE AND EVERYWHERE. SHE WAS DIAGNOSED WITH ASVD (ATRIO-SEPTAL-VENTRICULAR-DEFECT). IN ENGLISH, TWO HOLES IN HER HEART AND ABNORMAL VALVES. SHE HAD BAD ALERGIES SO WE COULDN'T BREAST FEED. SHE WAS ON 5 DIFFERENT FORMULAS BEFORE WE FOUND THE PERFECT ONE. ADRIAN WAS ONLY BORN AT 6 LBS. 7 OZS. SO SHE DIDNT WEIGH A WHOLE LOT BUT WAS AROUND AVERAGE. NOW SHE ONLY WEIGHS 7 LBS. 12 OZS. SHE HAS A HARD TIME GAINING WEIGHT SO WE STARTED HER ON BABY FOOD EARLY TO GET SOME WEIGHT ON HER.
ADRIAN IS IN MANY PROGRAMS AND I KEEP A CLOSE WATCH ON HER AND HER PHYSICAL ABILITIES. ADRIAN'S DS SEEMS TO BE MILD RIGHT NOW BUT I DONT DOUBT IT TO GET WORSE DOWN THE ROAD. SHE IS THE WIGGLIEST THING IN THE WORLD AND IS ALREADY TALKNG UP A STORM. SHE SMILES ALL THE TIME AND I PUT HER ON A STRICT PHYSICAL ROUTINE. SHE ALWAYS GETS HER MEDICINE'S WHEN SHE GETS UP AND GOES TO BED AT NIGHT. WE DO A 10 MINUTE EXERCISE ROUTINE TWICE A DAY AND SHE LOVES IT. SHE GETS A MASSAGE EVERY NIGHT AND ONE AFTER BATH TIME EVERY OTHER NIGHT. SHE IS ENROLLED IN ECI (EARLY CHILDHOOD INTERVENTION) WHICH GIVES HER EVERY KIND OF HELP WITH LEARNING AVAILABLE. SHE IS ON SSI AND RECEIVES BENEFITS FROM THE GOVERNMENT.
I CAN SEE ADRIAN A HEALTHY, SMART AND TALENTED YOUNG LADY ONE DAY. THE MORE I KEEP AT HER LEARNING THE BETTER THINGS WILL BE. TO HER DOCTORS SHE IS CONSIDERED A MIRACLE BABY. NO KIND OF BIRTH DEFECTS RUN IN EITHER OF OUR FAMILIES SO THE DOCTORS FIND ADRIAN'S CASE OF DS A NEW THING FROM NATURE. MANY PEOPLE ALWAYS ASK ME HOW I DO IT AND I JUST TELL THEM THAT SHE IS MY BABY, I DONT SEE HER WITH PROBLEMS, I ONLY SEE HER AS MY BABY. THE DOCTORS TELL ME THAT I AM NOT LIKE MOST TEENAGE MOTHERS. I TAKE CARE OF MY DAUGHTER VERY WELL WITH HER CONDITION AND EXPECT ONLY THE BEST CARE FOR MY LITTLE BUNDLE OF JOY.
SO IF ANYONE WANTS TO EITHER LEARN SOMETHING FROM MY EXPERIENCES OR TELL ME ABOUT YOUR OWN, JUST E-MAIL ME. I'M WILLING TO LEARN MORE AND HOPING TO GET INTO A SUPPORT GROUP FOR MOTHERS OF CHILDREN WITH DS.
My sister Lucy is DS and turned 26 years old last June. She, like many DS people, was born with a hole in her heart. At birth, the doctors had given Lucy a life expectancy of about 3 months. At 3 months, the doctors had revised the life expectancy to 3 years, pending surgery on her heart. At 3 years, and without surgery (my mother thought it to be too risky), the doctors were stunned. They suggested that she may live into her early teens, but didn't want to keep making bad guesses. In 1986, at the age of 12, Lucy acquired pneumonia. I remember the trips to the hospital very, very well. Lucy was contained in a "bubble" around her bed. I was allowed only occasional contact with her. She required extensive rest. My mother had prepared my 3 other sisters and I for the worst. But, after nearly a month, Lucy had miraculously recovered. No one can explain how or why she pulled through. But I think that I can. Lucy, like many Down's children, and other human beings less fortunate then ourselves, is here to teach us. Don't worry (for those of you who may be worried at this point); I’m not going to get all "bible banging" on you, so read on. Lucy spends most of every day soaking up the world around her. She memorizes words, phrases, knock-knock jokes, and virtually any one-liner you can think of. She has developed a focused mechanism for dealing with the repetitive situations of everyday life. If you say "hey Lucy!" She will always respond "Hay is for horses, grass is free, cows eat it, why don't we?" She has many pre-programmed responses like this; far too many to list. Whenever Lucy encounters an unfamiliar situation, however, she approaches it with a completely open mind, having absolutely no pre-programmed response. In this way, Lucy is almost the diametric opposite of "normal people". We like to make up spontaneous responses to familiar situations (called "lingo" or slang), while always using the same response for new ones (defensive or cynical). Lucy is incapable of cynicism on any real level. For example, if she meets a waitress at a restaurant, Lucy will say, "Can I have a hug?” or "You are kind of fat". The response is dictated completely by her observations, without any pre-judgment. We "normals" would never think of calling it like we see it. For all we know, the waitress might have some disease or be a psycho or something. In a sense, Lucy acts exactly the same way as any species that makes first contact with human beings. She has no reason to set up a defensive posture, or to believe that any stranger would have evil intentions. Isn't this what humanity feels it has lost? This is what Lucy is busy teaching us. She is pointing out how silly it is that someone with half of our intelligence can see it, and we cannot. We feel like there is always someone waiting around the corner to take advantage of us. Yet, we all feel an instinct that tells us that this is not the way it has always been. We all know, deep down, that trust is something that should be given for free, putting the pressure on our new friend not to lose it. Not something that should be earned before it is granted. And so, Lucy has made me painfully aware of one of the symptoms of the decline of our culture. She is a teacher, in many more ways than this. But none that make me feel more grateful to have her here with me. I have been observing and loving Lucy for all of her 26 years now, and I have absolutely no regrets. She is the angel that was sent down to guide me and those who love her. May she live to be 92. After all, we told her that she could get her drivers license that year. :)
I Was in 8th grade when my first sezurie first started and i was at my friedns house and we were having a blast and then, i had a seziure and it was really scary. i strated haveing sezures all of the time then and I could not belive it and then two years later. which now i am in 10th grade i am driving and i can be around sbrobe lights and stuff beucase i dont have them anymore. But i still have to take the meds for it. but i just want to tell people out there that there is hope and i hope your will go away, beucase you can grow out of it like i did. Thanks.
I'm 41 yrs.old and my third child has donw,s her name is Marisa Faith, she also had VSD, hole in her stomach, a hole in her heart, and pulmonary stenosis(which is the narrowing of the pulmonary artery that runs from your heart to your lungs.) She was born January 30, 1999, she was three weeks premature. Before she was born I new everything that was wron, except that she was down's, but I had a pretty good idea that she would be. They told me she would proba bly be blue and not breathing when she came into this world. But she looked fine,I didn't get to hold her until she was 2 weeks old , after she was born, they transfered her to Childrens, she was about 10 hours old, for her first surgery, which they reparied the hole in her stomach, they also gave her a feeding tube, she cam home on Feb. 15, 2000 for nine days, then she went back in until May 20, 2000 she had to go through another surgery for her pulmonary stenosis, they put a shunt in her chest, she did very well, but she lost her sucking,she couldn't breathe, suck, and swallow all at the same time. So, she had to keep the feeding tube in. March 3, 2000 she had the heart surgery. She was gainig any weight, she was three months old and under 7lbs. Then she started throwing up green stuff from her stomach, after four to five weeks of this, they determined that she had an acid reflux problem, so they had to do what is called a Nizzen( they go through you stomah and take a piece of stomach muscle and wrap it around the lower part of her esphogas) she cannot throw up. That surgery was done on May 7, 1999 in April of 1999, my husband and I started going to church , and gave our lives to Jesus Christ. On the Mon. before Marisa's surgery that had attempted to do the surgery, but she was very week, so they wanted until Friday, they said the surgery was a three hour surgery, but they would go slow, and take there time, they said expect about five hours. Well, we went to the surgery waiting room about fifteen minutes they called said that were getting started and she was doing great. We pray hard they she would make it, they gave her a 50,50 chance. About a half hour after the first call came the second call, I was really nervous, I went to the phone, she said we are done . the doctor will be out shortly, it took them 45 minutes. I know the lord was with her. And I thank him for what he has done. Marisa came home after she gained up to 7lbs. on May 20, 2000, but in November 14, 2000 she was back in for a month because the shunt in her chest wasn't getting enough blood flow to her right lung, so she had a hard time breathing. She was very sick, her heart was wesk, lungs were weak, she had not much hope.They had to put her on the breathing machine, which they put a long tube down her throat, and put a pick like in her jugulat vein. he was due for surgery four days before Thanskgiving, but five day before her oxygen level was only 39 percent. They called us at 3 a.m. that morning, we went over she was pretty bad. I ask them to lay her on her right side, and her oxygen level came up tp 59%. The Dr. told us if we had a Pastor we needed to call. Which we did. We got the chaplin of the hospital to come in and pray for her, she onited every part of her body and prayed. By the time the Pastor got there she was getting better. They scheduled her surgery 2 day before Thanksgiving. She was very weak. The day of the surgery I don't think I ever prayed so hard. I keep going to the chapel and praying, we onited a piece of paper towel and taped it to her leg. Her surgery was to be at 2p.m. but the little boy ahead of her wasn't done. But, Marisa wasn't doing all that well, her haeart was beating aroung 196 beats a min. Well, 3p.m. rolled around she still wasn't in surgery, well her heart beat went down below the 90's not good. At ten minutes to five they said they would take her back at five no matter what, and then just like that her heart rate went to about 120 beats a min,. just perfect. God really works, and he really hears prays. She made it through surgery jsut fine. she came home two days before Christmas. There's nothing else they can do for Marisa's heart they said they could just repace the shunts with shunts. because Sorry I forgot to mention they put another shunt in the right side of her chest. So, she has two shunts, and they wil just replace them as she out grows them. She can live to be about 15 yrs. old. I really thought I could handle all this, but it is great she is great, god will never give you more than you can handle. Now a days Marisa has OT. speech, ad a nurse coming into our home. She is 2 yrs. old about 25lbs. and has almost all her teeth, she has lots of hair, and is doing great, she is rotten, she has a brother 12 and sister 9,she loves to hear christain music and loves to dance, she says quite a few words we love her so much. I tip my hats off to all of you parents they take time and love your child, I 've heard about mothers putting there babies in institution, or up for adotoption. Down's babies are just so loveable. I just can't see how people can be so cruel. Well I believe this is enough. If you would like to e-mail me feel free I would be glad to hear from you.
I WAS 20 YEARS OLD WHEN I BECAME PREGNANT WITH MY FIRST CHILD BRIANA. SHE WAS DIAGNOSED WITH TRISOMY 21 ON JANUARY 3, 2000. LIKE MANY OF YOU WE DIDNT FIND OUT SHE HAD DS UNTIL AFTER SHE WAS BORN. MY OB DR SAID I HAD NOTHING TO WORRY ABOUT BECAUSE MY HUSBAND AND I WERE SO YOUNG BOY WAS HE WRONG. BRIANA HAVING DOWN SYNDROME HAS REALLY INFLUENZED MY HUSBAND AS WELL AS MY SELF. SHE IS THE MOST WONDERFUL BABY IN THE WORLD SHE HARDLY CRIES AND SHOWS SO MUCH LOVE. WE HAD A TERRIBLE BIRTH EXPERIENCE AS SHE WAS BORN 8 WEEKS PREMATURE AND HAD TO SPEND 48 DAYS OF censored ON EARTH IN THE NICU AT USA WOMANS AND CHILDRENS HOSPITAL. THE DOCTOR WHO WAS THE HEAD NEONATOLIGIST DIDNT HAVE THE GUTS TO TELL US OUR DAUGHTER HAD DOWN SYNDROME, SO HE LET A NURSE TELL US THE FIRST TIME I HAD EVER SEEN HER. SHE WAS BORN BY C SECTION JAN 1 2000. THE DR INFORMED US THAT HE WAS TO BUSY TO DISCUSS MATTERS WITH EVERY PARENT IN THE NICU THAT HE TREATED 88 BABYS DAILY. WE WERE BLESSED AS BRIANA DIDNT HAVE THE COMMON HEART PROBLEMS ASSOCIATED WITH DOWN SYNDROME. SHE HAD TO STAY ON O2 TILL SHE WAS 5 MONTHS OLD AND IS NOW DOING VERY WELL. AT 13 MONTHS OLD SHE IS GETTING HER FIRST TOOTH AND IS LEARNING TO CRAWL. SHE CAN SAY A FEW WORDS SUCH AS DADA AN NANA AND DIN DIN SHE IS OFF THE BOTTLE AND IS DOING VERY WELL. I WOULD LIKE TO MEET OTHER PARENTS WITH CHILDREN DIAGNOSED WITH DOWN SYNDROME PLEASE CONTACT ME AT P.O. BOX 1838 ROBERTSDALE AL 36567.
Yes, I am 16 years of age and I learned about Down syndrome this year in my biology class. My teacher told us about the symptomes and how you get it. I thought about it and I decided that I wanted to do the best report in the class and I did. If you are to go to Down Syndrome pictures you will see pictures of people with this disease and you can really learn alot about Down Ssyndrome. I'm glad I used this as my project I also learned a lot about other people.
Yes, I am 16 years of age and I learned about Down syndrome this year in my biology class. My teacher told us about the symptomes and how you get it. I thought about it and I decided that I wanted to do the best report in the class and I did. If you are to go to Down Syndrome pictures you will see pictures of people with this disease and you can really learn alot about Down Ssyndrome. I'm glad I used this as my project I also learned a lot about other people.
i am 14 years old and over this passed summer i had the privalge of babysitting a 2 year old little boy with ds.even though he was just learning to talk and it was hard for him to walk he was very smart and funny.one day i went to get his dipers and when i got back he had changed the channel on the t.v to mtv and was danceing and humming to the tune.i had never seen him do that before so the next time his theripist came she said he responds to music very well.even though some people seem to not under stand sometimes they realy do they are smart but just don't know how to express it. i had to cry the day he said my name. he hadn't even said mommy or grandma yet and he said my name, i felt a special bond with my little buddy. he would never watch cartoons he would oly sit and watch little house on the parie and mtv and the real world, he would laugh when the people on tv would laugh then turn around and make sure i was laughing with him.all people with ds and people i look up to because the are brave love everyone and bring out the best in people.sorry if i bored you with my story . love ~me~
I had Jake when I was 19. We didn't have a clue until after I had him that he would have ds. All the tests before were fine and no one had any history so how likely was it that something would be wrong. You would think i could win the lottery with this kind of luck with numbers! Anyway, of course it was shock. when they put him on my stomach, i said "oh i had a smurf". I've been reading the message board and saw where someone else thought about the same thing. i was young and immature and didn't know what to expect so i thought everything was fine. I had jake at 7 in the morning and i wondered why they hadn't brought him by but we were so busy with everyone and i slept quite a bit; i was not worried. then the doctors came by, I went into shock immediately. looking back i realize that but then i was just devastated. they transferred him to another hospital that night and i got discharged the next day. Jake was on oxygen and they said he had a hole in his heart but thought it would close up on its own. i didnt' get to hold him for days and he didn't make it home for christmas, but he made it just in time for new years day! The NICU at Centennial hospital was great. they taught us cpr and had a rooming in the night before we were to take him home. it made me feel more comfortable. i was scared i'd take him home and something would be wrong and i wouldn't know it. the early intervention program in tn was good. i got jake in a great school (duncanwood) and they taught jake and I both a lot! everything was good until he had to leave duncanwood cause they only have them until they are 3. then it is on to public school and that is a horror story. but let's talk about jake's medical problems for now. i still have many many years to fuss about the schools. the doctors said he had 1 hole in his heart(VSD) and it should close up on its own. for 3 years they kept saying it sounds good, its getting louder and that means it is closing. yeah right. they sent him in for the heart catherization and told me they needed to do surgery but during the cath he seemed to have trouble breathing. I was about 6 months pregnant at the time. They took his tonsils and adnoids out about a week later and he they kept him in the hospital for 7 days! i kept telling them to let me take him home and it he didn't drink i would bring him back the next day. no doing until that 7th day, he still wouldn't drink and his iv fell out AGAIN and i wasn't going to let them put it back in. that was horrible, I'm sure a lot of you have seen how the fluid gets under the skin and their hands swell up like the nutty professor. we got to go home and we weren't there an hour and jake was drinking. we put barney on, put the cup on the table and he went right to it all by himself. i wasn't prepared when he spit up scabs a few days later. i rushed him to the hospital. i mean people with gunshots (yes, on tv) spit up blood and jake was the only experience i had with medical stuff. LOL it was a site. a huge 6 month pregnant woman who was half naked,jake spit his scaps up in his sleep that evening and we were all going to bed, came carrying her baby in the er. oh the memory! they let him heal for a month and put him in for heart surgery. the surgeon prepared us with pictures and i think that helped so much. the whole experience was KIND OF funny. I was 9 months pregnant. i prepared myself so well that the surgery didn't upset me a whole lot. they did find 2 wholes but had no problem repairing any of it. but the next day i lost it. jake did pretty well overnight but when i walked into the icu that next morning all i could do was cry. the nurse didn't know what to do. thank god for my mom. jake had a reaction to the moriphine that first night and i don't think they gave him any pain medicine after. I didn't realize it then and jake wasn't acting like he was in pain. they discharged him 4 days later. 4 for heart surgery and 7 for tonsils! when i left the hospital they didn't give jake pain medicine. i was carrying him and he bit my shoulder and at the time jake wasn't a biter and i realized by baby was in pain. i felt and still feel horrible that my baby was in pain for days and no one, not even me, did anything about it. before jake's surgery i couldn't tell jakes heart was bad. he was active and there was no sign. but afterwards he actually started eating things he had never touched. i don't know what that has to do with heart surgery but he started to eat and grow. that was wonderful. thank god jake has done well since then. he has had tubes twice. once before his tonsils and then again when they did the tonsils. his chest did not heal correctly after surgery. It isn't obvious and the surgeon tried to convince me it was just the cut that was crooked but his chest actually is pointed. his new doctor says it could have been caused by him playing after or even a cough but that it is just cosmetic. doesnt' really make me feel better. but he assures me that as jake grows his chest will even out. jake is 7 now and still no other heart problems and his ears are doing good. He has had stiches twice. both times too close to his eye. the latest was chritmas eve 1999.(fell on the wood couch while he and his cousin we playing) our main problem now is school and the potty. i have a 7 year old who poops his pants and i dont' know what else to do. he doesn't talk good but i can understand him and he understands a lot! I have had to fight with the school every year. they never want to put him in with a regular class and transportation isn't working. they want to put my 7 yr old in a carseat when i know he can ride in a seat belt. i was young when i had jake and couldn't relate at the parent meetings so i've never gotten to just talk about jake with other parents who have gone thru some of the same things so thanks for a place to do that! all this probably sounds kind of negative but i am very thankful for my wonderful little man. he has changed me for the better and given me experiences that i could never imagine. he has slept all night since he was month old and has always been happy. He is not and has never been a whiney baby even thru all he's been thru. he is the biggest flirt and showboat. I have got to get him into gymnastics or anything that has uses balls becuase he has talent. sorry to write a book.
Iam an iranian lady about 35 years old with two daughters its about one year i got hurt pian . i talked with my doctor after several test he told me , i have problem with hurt's vessel and he mentioned that i should have open surgery. now please tell me what iam doing for my treatment and my diet and my daily life schedule and medicine. THANKS
I am 57 years old. I had my son Nathaneil when I was 44. Nate is 13 years old and he is a blessing to my husband and myself. There are days that I could do without his silliness but for the most part he is kind and very helpful.The problem that I had with the whole thing is when Nate was born they took him from me for one week while they did tests. I asked the doctor if I could go to the hospital with him. I was at one hospital and he as at another because I had a C section I stayed in for awhile. My Doc said no. You will be with him for the rest of his life.
Nate was high functional and at first he seemed fine. It wasn't until he got older that things started to service. We pray for Nate and we have taught him to pray. All is well because God is good.
HI everyone, My name is Sheri I am 28 years old and my husband is 30. Our son's name is Corbin, his is soon to be 22 months old and he has ds., his is our first and so far are only child. I have lots of wonderful stories to share with you and could go on on forever. But instead what I am looking for is some one to talk too. My husband and I are considering on having another baby and although I really would like to have more children I am not sure I am ready and I thought maybe if I talked to other people who have been through it or who are thinking of a second child it may help me to get over any fears I may be having. I am not even sure if they are fears, I guess its mixed things I am not afraid of having another with ds. My son was born very healthy other than some breathing complications that he grew out of when he was 4 months old. He has brought so much happiness to our lives, I would not change things for the world. So if there is anyone out there interested in sharing some advice please e-mail me or I would love to read some of your stories about having a second child on this site. Thank you for reading Sheri
My family and i have a little boy who is 3yrs old with downs.We have had him since he was 2 months old.His real mother did not want him becouse of his downs and because he had to have heart opperation.He had his opp when he was 3 months old,eye sur when he was 7 months old.Our adoption is all most done.Ialso have two girls 14&9.Our little angels name is Nicholas Allen.He our whole world.Thing have been tough but we would do it all over again.
Hi my name is Su I am 30 years old,married and we have one child. Our daughters name is Casey and she has Moasic Downs Syndrome. Casey is two years old and the most amazing child i have ever met. Chris (my husband) & I were very shocked to find out when our daughter was born that she had DS. We were even told that if I had had the amnio it still wouldnt have picked it up. Medical science, its great isnt it. Any way we wouldnt change Casey for all the money in the world, she is beautiful, independant and very very nosey. If any one wants to email us please do not hesitate to. Hope everyone is doing well
Hi my name is Su I am 30 years old,married and we have one child. Our daughters name is Casey and she has Moasic Downs Syndrome. Casey is two years old and the most amazing child i have ever met. Chris (my husband) & I were very shocked to find out when our daughter was born that she had DS. We were even told that if I had had the amnio it still wouldnt have picked it up. Medical science, its great isnt it. Any way we wouldnt change Casey for all the money in the world, she is beautiful, independant and very very nosey. If any one wants to email us please do not hesitate to. Hope everyone is doing well
Hi my name is Su I am 30 years old,married and we have one child. Our daughters name is Casey and she has Moasic Downs Syndrome. Casey is two years old and the most amazing child i have ever met. Chris (my husband) & I were very shocked to find out when our daughter was born that she had DS. We were even told that if I had had the amnio it still wouldnt have picked it up. Medical science, its great isnt it. Any way we wouldnt change Casey for all the money in the world, she is beautiful, independant and very very nosey. If any one wants to email us please do not hesitate to. Hope everyone is doing well
I have four children.My fourth child was born with Down Syndrome he is four yrs.old.My son has been such a blessing to our lives that we are trying to foster or even adopt a Down Syndrome child.I think we should all be thankful that GOD has trusted us to be the parents to these wonderful children.These children are a gift from GOD. Tina
My youngest child, Gabriel, is 11 and has Down Syndrome. I was 41 when he was born, at home, in our cabin in northern California. I have two older children, Laurel, my 15 year old daughter, and Garth, my 23 year old son (no longer living at home, but close by). When Gabe was born, although I had worried about Down Syndrome during the pregnancy (&, actually, during my pregnancy with my daughter), somehow all thought of it left my mind. My midwife said nothing. It wasn't until Gabe was 5 or 6 months old that I finally asked the question that had weighed on my mind--might he? He was an active, sweet baby, and I had previously explained every oddity away (kids are different, my eyes slant...). He has been and continues to be quite a gift and a challenge. We live very rurally, so we haven't access to many (any!) special programs or such, no services. We homeschool, and have a little bookstore. Gabe has a loving heart and makes friends with all sorts of people. He is dramatic and sometimes tempestuous, given to great sudden performances (he keeps saying he is waiting for "his show" and wants to be like Ricky Martin. He is very courtly with pretty women. I would very much like to hear from other parents of preadolescent DS kids. It seems to me there is lots about DS babies and toddlers and such, and so little about teens. I would also be interested in hearing experiences of folks dealing with the effect of their beloved DS kids on the rest of the family. I have to laugh at the Down Syndrome "angel" concept (though my Gabriel is sometimes angelic--but he can be as mischief filled as any other kid, and teases his sister quite effectively. He adores his dad, who (at just 63!) is sometimes challenged to keep up with him. We have many cats, and a huge patient dog. I would not for a moment trade my life with any of my children, all of whom enrich it tremendously--but I can see challenges ahead as Gabriel comes into his teens in a while. I send best wishes to all of you. Kathy
HI I just move recently to Miami and Iam having a hard time with the education my daugther is reciving from her current school I dont know if is the teacher or just the form of teaching in that school but I dont think she is learning any thing at all I also feel she is falling behind on her education if is possible i would like some help from some one in the area that could tell me about any good school in the Miami or FtLauderdale area and if is possible where or what I have to do to have my daugther transfer or where I have to go to seek a solution for my problem I will apreciate any help from anyone Thank you
My son Gabriel was an extra special addition to our family. My wife and I were married 16 years when Gabriel was born.We already had a 15 year old son, a14 year old daughter and I had a 20 year old daughter from my 1st marriage. My wife was very determined determined to have our final child. Prior to Gabes birth we lost two babies at almost 5months in pregnancy. Gabe had open heart surgery at age 2(presently 3). But no other medical Problems. Even though Gabe cant walk yet, my wife had him potty broke from bowls at age 2 nad now wets his diaper only at night. Even though he can't speak but very little, by his communication gesters he can tell us when he's hungry, has to use the bathroom, when he is ready for a bath. Final word ,the love I have for my son, God has'nt created a word for yet.
My boyfreind has a 16year old with down syndrome weve been together almost 3 years sometimes its really hard for me to be understanding i really could use someone to talk to about this if anyone is interested please write to me thanks kim
Iam the mother of four,three boys jerry jr 26, chris 20 kevin 16, and one girl samantha,ds she is 10. i knew befor she was born that she was going to be downs and that she had a hole in her heart. it was repairde when she was just 6 mos. I have been married to a wonderful man for 21 years. He was calmer about the news then me.Sammi has been in and out of the hospital sence she was born.she has a gt because even though she can eat there are time when she won't she also has a few behavior problems that we are working on now, this is the biggest problem for my husband as he was raised the old fasion way. even with all the ups and downs mostly downs lately I would not change sammi for all the world,God chose me to have her just the way she is.
At age 41, I found out I was pregnant, already having three boys, ages 20, 18 and 9. At 4 months, I found out that my much wanted baby girl had down syndrome. At first we cried and tried to read all there was. But eventually we just hoped that she would be as healthy as she could be. Of course, we went through every test there was to make sure she would be born safely. At 8 months, I had an emergency C-section. She was everything we had hoped for, a 3lb. 12 oz. healthy baby girl. She brings so much joy to my family. Her brothers adore her, she is a very popular little girl. She is now 16 months and is crawling all over and getting into everything. We are all looking forward to her first step. She plays with the boys making all silly faces. She is so much fun. I would enjoy corresponding with anyone else who would like to brag about their child as much as I do about mine. She is truly a blessing. I would not trade her for the world.
I am the youngest of six siblings and my oldest brother Paul has DS. He just celebrated his 58th birthday on Oct. 27!!! He is truly a special angel. We are luckier than most He has been in really good health until he had pneumonia this week but is home recovering. I ran across this site and wanted to tell everyone that for every day God blesses me with his presence, I am thankful. He lives at home with me. Our parents are deceist. Don't give up on love.
Hello Everyone, I have only recently stumbled onto this site, and am so glad that I did. The friendship and support that you all share is something I would dearly like to be a part of. I am 34, and have been happily married to Darrell for 13 years. We have 2 children. Trent is 9 and has DS, and Desley is 6. Trent is a fantastic kid, but then I am certainly biassed! He attends our local state school, and will be starting year 4 in a few weeks. His speech is not real good, but his comprehension is, and he is a (mostly!) happy boy. Desley and him are extra special friends which is lovely, although she has been getting a little bit sad lately about the whole DS thing. At 6 years old, she is quite the mature little lady. I look forward to getting to know you all. Hopefully, I'll be able to work out the time differences between here and America, and will be able to join in the chats too.
Hello all to start off I want it to be knowen that I gave location and state because I know That thease clowns that write the stuff that is very insulting to all of us that have and or deal with DS chrildren are worse off and more handicaped than any child or person with DS and I would also ask that the person that updates this site please do a better job at checking and removing this stuff PLEASE if you need help I am more than willing to lend a hand. Now for the rest I am a 41 year old man and I have 3 kids all perfectly healthy and I know you saying and your point. well a little over a year ago I meet the most wounderfull woman and her son her stories and even pictures of her son are on this site well to set things more in place and the hole truth now I have four kids two boys and two girls one of my sons has DS thats right My son and he is a great boy and I would rather have I child like patrick than one like the one's that insult this site And parents of DS children are all very special people just like their kids and in my opion and from my exsperence DS children are closer to god in sperit than most people and they are a true blessing. yes they test us and put us thru the tests daily and they Have special needs but they are pure of heart and they are more than willing to give 100% of themselves and they do it for love and only love and thats an easy thing to give them in return. I am very glad that I was given the opertunity to meet patricks mother and was blessed by her and patrick the day we started seeing each other and with help from god me beth and patrick and my kids will always be a family.
I gave birth to a little girl when I was only 19. I was told that with the depression I was suffering already I should consider giving her up at that time. This was before seeing her and prior to being told that she had Downs. The decision made at that time and the one I continue to have is that she was a gift from God. She was created by God and only he could determine the faith of this living human being. After 17 years of advocating,making sure she received all the services available in our small town of Mayberry, I know that there was no choice as far as life verses my depression. I later started college and earned a degree. I thank my parents for believing in me and God for giving me the strength to make it this far. I now am a graduate from Gardner-Webb University with a Bachlors Degree in Science. My daughter attended with me when there was no sitter available. Issues in regards to available services in the area should be apparent. Only after working for five years with children that had many special needs due to neglect and abuse did I decide that my meaning in life was still in the early stages. I AM NOW A STRONG ADVOCATE FOR MY DAUGHTER, A GRADUATE FROM PARTNERS IN POLIECY MAKING AND A QMRP FOR THE RESIDENTIAL SERVICES IN OUR AREA. I hope that with the hands on experience I will have insight into guardian concerns. I also feel that the residents input should be important in putting future goals in place. They need to be present even if they do not respond to question. If they are unable to provide input they should still be allowed the opportunity to hear what is being said. I am proud to say that my daughter, Tabitha, is doing great. SHE OPENS OUR LOCAL SPECIAL OLYMPICS WITH HER VERSION OF GOD BLESS AMERICA. I HAD VERY LITTLE DOUGHT ABOUT HER ABILITIES BUT SHE CONTINUES TO BE ABLE TO SHOCK OTHERS WITH HER STRENGHTS. SHE CAN NOW READ SURVIVAL WORDS, DANGER SIGNS, NUMBERS, LETTERS,MEMORIZE SPECIFICE TRACK NUMBERS FOR HER FAVORITE SONGS ON ALL HER CD'S, BATH HERSELF, DO HER OWN DAILY HYGIENE WITH LOTS OF ENCOURAGEMENT, RIDE A BIKE, HAVE TEENAGE FEELINGS ABOUT WANTING A BOY FRIEND, WANTING TO DRIVE A CAR, GET A PLACE AND MOVE OUT WITH HER FRIENDS, PLAYS SPORTS,COOKS IN THE MICROWAVE, PUTS UP GROCIERIES, DRESSES SELF WITH MINIMAL GUIDANCE, ENJOYS MUSIC, LIKES TO PAINT NAILS, LIKE TO JOURNAL, TALK ON PHONE, LOOK AT MAGAZINES, PLAY HER PHONIXS GAME ON THE COMPUTER, COPY OTHER LETTERS, ECT...
My son Azariah is 2 months old. I had never imagined I would have a kid with down syndrome. I had a relatively easy birth at a birthing center. I was very surprised when my midwife said he might have "chromosonal problems". I wish she would have just said Down Syndrome because I wasn't sure what she was driving at. They rushed him to the NICU at the hospital across the street to do some tests. I stayed at the birth center for a while to rest. My husband went with him and never left his side. Turns out he was healthy except a mild case of jaundice. They made us stay in the hospital anyway for observation. I hate hospitals. The nurses were incredibly rude and rough, but at least they let me breast feed without trying to supplement him.The next week was incredibly stressful- full of tests and visits to hospital, pediatrician, and genetisists. When they finally confirmed he had downs me and my husband were shocked, but not too upset. I knew the Lord would take care of us, but we had a challenging road to follow.
It seemed like because we were young (Im 22)husband (24), and that we weren't noticibly upset by the news, that no one seemed to trust we knew what we were doing or that we were in denial, not accepting our "loss", or too idealistic.
I love my son tremendously. He is already full of character. I am overwhelmed by all the info out there about downs and am not always sure what the best things to do for my son are. But not once have I wanted things to be any other way. The future seems hazy, but I am excited about our lives together. I would love to hear from other young mothers, or any mothers at all. To share stories and chat. We are moving to a very isolated town in New York soon and wont have many people with similair issues to talk to.
WHEN I WAS CARRYING MY ONE AND ONLY SON AND I HAPPENED TO BE IN OB CLINIC ABOUT 33YRS.AGO. I SAW THIS DS LITTLE GIRL AND ALL I COULD THINK ABOUT WAS A LITTLE ANGEL. I WAS TO BUSY HAVING MY OWN FAMILY,BUT NONE OF THEM WERE DS,EDUCABLLY HANDICAPPED,NONE WERE DS. I THEN 28 YRS. AFTER HAVING MY LAST CHILD AND A TUBALIGATION I WANT TO ADOPT A DS LITTLE GIRL . WE ARE IN VERY GOOD HEALTH AND MY HUSBAND HAS A GOOD JOB AND I NEVER WANT TO LEAVE THIS WORLD WITH OUT HAVING TO CARE FOR GOD'S LITTLE ANGELS AND HOLDING ONE AND SAY I LOVE YOU LITTLE ONE AND TUCK HER IN LACED BEDDING AND HAVE ANGELS SURROUNDING HER. PLEASE GOD SEND ME ONE TO ADOPT REAL SOON. THANK YOU FOR LISTENING A MOM WHO IS WAITING ON GOD TO FULFILL HER PRAYER. EILEEN
i have a boy with DS he has 8 years of age, his name is javier alexander and he is the most beautiful experience I have I think is god present in my life, my history is that when I was pregnant I always knew that my baby had down syndrome, I alway was thinking on that and when he born and the doctors told me I was not surprize because I knew.
Hi! My sister,Andrea, who is now a proud 30, has DS and she gives me the utmost joy and is an example of patience and intelligence for the whole family. She was my parents' first child, at 25, and I must say that it has truly been God's blessing for all of us -she takes her role as elder sister very seriously, and I even have to follow a curfew (even though I am 26)which I do with joy! I am indeed priviliged in experiencing the love of my sister and I truly believe that all persons with DS are angels on this earth, here to teach us about love, tolerance, and the sheer joy of living.
Hi Just thought I would let everyone know alittle about me.I found uno mas about 2 weeks ago.My son Sonny is 6yrs old and has ds. I had Sonny little late in life.I was 37 when I found out after trying for 1yr to have him that I was prengant.We My husband Steve and I went to gentic counseling since I was over 35.We were told we had a 3% chance of having a child with ds.I thought 97% he would be normal,and if there was something wrong we decided it wouldn't make a differance to us to have a amino, since theres a high chance of spontneous abortion we decide against the amino.I thought with 3% chance luck was on our side he would be just fine.My ultrasounds(3) of them showed no signs of any health problems.So when my water broke and we went to the hospital,I stil had not started labor.They pushed the pitosen and his little heart kept slowing down and after 10hrs of labor they decided to take him c-section.He was born on August23,1994 at 11:07pm and ironcally he weighed 7lbs11oz. he was our 7-11 babyor11-7.We didn't find out he had ds until they put him in intensive care for failure to thrive.After a week we took him home and six weeks later we found out through his dna test he has tris-21.Now he is a very active 6yr old in 1st grade.My husband works out of town almost everyweek and is only home on the weekends.I work partime for a large travel company doing reservations.Prior to having Sonny I worked for 17 yrs at a medical firm that made heart catheters as a qa inspector and when Sonny was two,I became very ill and had to have a full hysterectomy.I had endometrioes so bad they were surprised I even was able to have Sonny that he was basicly a mircle.Which I do so believe now, I did grief in the begining for the person he would not become.But now days I feel I'm blessed to have such a cute adorable child.Some days are certianly trying as we all know but love him soo much.Even when hes throwing him self on floor and not wanting to cooperate at all.I was a single mom raising my two older children when I met my husband 9 yrs ago.I was single for 13 yrs, my first husband left me when I was pregnant with my second child he just couldn't handle the responsiblity.So when Steve and I married I felt there was one more little person that should be in my life.I've been also raising my husband two oldest kids they moved ins with us about 5yrs ago.They are so great with there little bro. But I think Sonny feels like he has too many chiefs at times.But love his hugs and kisses and how he can make people smile with his Hi's and waves at the grocery store.He just seems to light up most people and makes them smile,Its magic in the works when he smiles and shakes peoples hands.
I got this report to do not long ago about Down Syndrome, I was not to thrilled about it. It was hard to find info about it until I came to this web-site. Thank you for all your great info! Now I have more feelings for those people that have DS! God bless you and remember I care!Love Amanada! ^i^ ^i^ ^i^
HI!! I'm a 15 year old girl!! I have just been reading through all of the storys and they are making me want to cry!! My mom is going to have a baby and downs was a big concern. She went in for an ultrasounda and we found out that the baby is perfectly fine! I'm so happy! I pray that you all have wonderful and happy lives God Bless ^i^ Laura ^i^
This is a Great way to hear from others with a interest in our God Jewls!! Some Understanding and Others so Worldly.. Please take my invite to visit my sons webpage. You will love it ~j~ at> http://www.Angels4Real.com > You will enjoy the Real Picture of an Angel too.. Plus, Learn so much more.. God Bless all ~j~ I will be back often colleen and 7 yr. old son Colby
My name is Regan and i am married to my husband Tim for 8 years but together for 14. we have 3 kids. Josh(my husbands nephew )is 14, Chaz is 12 and Shelby is 31/2. I worked in a facility for severe and profoundly handicapped kids for 6 years and then the school district for 1 year until the day(literally) that Shelby was born. I had to have an emergency c section because during labor her heart rate wouldn't go up. So they put me completely out and three hours later I got to see my angel. We had no reason to suspect anything would be "wrong" because there were no major events in my pregnancy.But I knew the minute I saw her she had DS.I kept asking everyone if they thought she was ok and all said she was perfect, absolutely beautiful.But I knew there was something different. She wouldn't nurse, now I know because of low muscle tone, but she ate like a trooper. The nurses all acted too nice and that helped in the conclusion that maybe something was wrong. The day before we left the hospital the doctors(all 3 of them) and the head nurse came into my room to break "the news" thats when I blurted out "she has downs doesn't she?" one doctor said he wouldn't possitively say that because if she did the features were very slight but the other 2 and the nurse were convinced. They tried to get blood for the karyotype but the couldn't find a vein and after listening to my baby scream all the way down the hall I put a stop to it. They directed us to Ames, which is a bigger town with more specialized doctors. We went to this female pediatrician and she confirmed the findings just on sight alone but tried to get the blood as well and again to no avail at which time I went in and put a stop to it and she became quite angry. She also said Shelby had a murmur but nothing to be alarmed about and to get it rechecked when she's about 2. So I took my baby and went home sad and hurt and scared.A month later at the age of 2 months we were going to go to a DS clinic and I called a lady from the Uni. of Iowa Hospital Schools to confirm and we began to talk and I told her of the murmur and what the ped. doctor said. She said absolutely not, we needed to get that checked out ASAP.So she set up the appointment and took care of everything,she saved my baby's life, and a week later we made a 2 hour drive to a satalite cardio clinic. The appointments average 2 hours after 31/2 I began to worry. After 5 the doc came in and said Shelby needed surgery that she had an AV Canal defect and the pressure in her lungs was extremely high but we needed to get some weight on her. If we opted not to do the surgery she wouldn't make it to a year old. We couldn't believe what we were hearing. She rolled over a 4 weeks, she slept all night, she ate like a pig, had super color and to just look at her you would never know she was so ill. So we went home for almost a month to fatten her up and on June 30 we made the 6 hour drive to Iowa City to prep for surgery. On July 2nd. we handed our 3 month old over to the surgeons and god and sat and waited. 8 hours later our surgeon appeared with a smile and said all went well and he was proud of one of the best valve jobs he had EVER done. We spent 8 days in PICU and 15 days on a Peds Cardio floor. While there I met a young intern who told me how it was gonna be done and boy did we have some problems. Shelby was used to sleeping all night before we went now they woke her in the middle of the night 3 times to get her to eat and it was never very successful. So I went to this young man and said "let me feed her all those cc's during the day so she can sleep all night" first he said she'd NEVER go back to her old routine so I should stop hoping and I'd never get her to eat all during they day. Well, first day she ate all and first night she slept all night and each day continued the same way until we left. On that day he said to me "well sometimes I guess moms are right" and I said "if you spent more time listening to moms instead of all your doctor books you'd realize that NO ONE knows our kids better than us." We brought Shelby home and she has been impressing us every day. She now goes to pre-school every day all day and loves every minute of it. I thought she'd come home worn out but not her. She has more energy and zest for life than the other four of us in the house. She has a verbal vocab of 10-15 words and a sign vocab of 15-20 words. She understands all, almost dresses alone, and is ever closer to being potty trained. I realize we are truly blessed with an angel in our lives. She keeps us young and makes us happy every day just with her smile. I would have my life no other way.
First of all, I have never given birth to a child with down syndrome, so I don't know the feelings and emotions that parents feel when they are given the news that their child has ds. We are foster parents who, before Jake, never had the privilege of knowing any one who has it. We started into caring for him with the same confusion and misinformation that I'm sure many new parents of babies with down syndrome have. We brought him home from the hospital when he was three weeks old. We've been through the heart surgery and all that that involves. Met some wonderful people.Had some great Drs. and some not so good. We've learned to ASK QUESTIONS and to QUESTION EVERYTHING. We have adopted Jake. He's 22 months old now and the most wonderful child. He's a cuddler. Because of Jake we have decided to adopt another child with down syndrome. It's amazing (and so sad) that there are people out there who are so misinformed and afraid and yes, ashamed that they choose to give their child away just because they have an extra 21st chromosome. By the way, our new baby is Caleb and he's an adorable child he is also going to have to have surgery. We're better prepared this time and more knowledgable about ds. Both of our little guys have so much potential and we have decided not to let anyone put roadblocks in their path such as labels and negativism(is that a word?) I guess in closing this letter, I just want to say to people: Learn as much as you can about ds, talk to other parents of children with ds, and don't listen to people who imply that your child is somehow damaged or unteachable and that you are to be pitied. Most of all let your child teach you that he IS PERFECT and you as his parents are MOST BLESSED.
SORRY.....SHOULD OF BEEN "WAIT"
I LOVE THIS PLACE, THE STORIES MAKE MY LAUGH AND OTHERS MAKE ME CRY. I TOO HAVE BEEN BLESSED WITH A DOWNS BABY, I'D LIKE TO SHARE MY STORY WITH YOU. FOR 5 MOS,I FOUGHT TO KEEP MY BABY, I ALMOST LOST HER MANY TIMES AND JUST WHEN I THOUGHT ALL WAS WELL, I GOT A CALL AT WORK FROM THE DR....SOME TEST CAME BACK ABNORMAL AND HE WANTED TO DO AN AMNIO, THAT ALONE SCARED ME BUT IT HAD HAPPENED TO ME BEFORE. SO THE NEXT DAY WE WENT AND HAD IT DONE AND ABOUT HAD A NERVOUS BREAK-DOWN FOR THE NEXT TWO WEEKS. IN MY HEART I KINDA KNEW SOMETHING WAS WRONG, TWO WEEKS CAME AND WENT, EVERYDAY I CALLED THE DR ON THE WAY TO WORK AND ALWAYS WAS TOLD, 'SORRY HON STILL DONT HAVE THE' I KEPT REMINDING MYSELF -NO-NEWS-IS-GOOD-NEWS! WELL, LIKE EVER OTHER DAY I STOPPED TO CALL AND LUCKILY MY COUSIN WAS WITH ME THAT DAY, CAUSE INSTEAD OF THE USUAL I WAS TOLD THE DR NEEDED TO TALK TO ME, I KNEW, MY HEART SANK AND I INSTANTLY STARTED CRYING BEFORE HE EVEN GOT TO THE PHONE, I COULD TELL BY THE SOUND OF HIS VOICE, HE JUST SAID IT WAS A BABY GIRL WITH DS. BUT THERE WAS SOMETHING ELSE HE NEEDED TO TALK TO ME ABOUT AND WANTED ME IN HIS OFFICE IN 1 HOUR. I WENT TO GET MY HUSBAND FROM WORK AND RUSHED TO THE OFFICE, WE CRYED THE WHOLE WAY, WHAT ELSE DID THE DR NEED US FOR AND WHY COULDN'T HE TELL ME OVER THE PHONE? THERE HAD BEEN A MISTAKE...ON THE AMNIO SAMPLES SENT OFF THEY HAD USED MY LAST NAME BUT THE FIRST NAME WAS WRONG, THEY HAD SWITCHED THE FIRST NAMES WITH ANOTHER PATIENT, WHO HAD ALSO HAD ONE DONE...SO THEY WAS ABOUT 90% SURE IT WAS MY BABY WITH DS, OF COURSE THEY WOULD DO ANOTHER FOR FREE ITS JUST NOW WE HAD TO WAIT AGAIN!! THIS TIME FOR ONLY 3 DAYS BUT IT SEEMED LIKE FOREVER,THAT TEST WAS POSITIVE TOO, WE WERE SENT TO A SPECIALIST AND FOUND OUT 1 MO LATER THAT SHE HAD A HEART DEFECT AND BY 7 AND A HALF MO IS WASNT ALLOWING HER TO GET ENOUGH BLOOD FLOW TO HER BRAIN, SO SHE WAS BORN AT A HUGE 5.4 LBS STAYED IN THE HOSPITAL 8 DAY DUE TO CONGESTIVE HEART FAILURE AND CAME HOME ON MEDS. WE WERE IN AND OUT OF THE HOSPITAL ALOT UNTIL SHE COULDN'T HANDLE IT ANYMORE, WE WAS TRYING TO WEIGHT TIL SHE WAS BIGGER FOR THE SURG BUT HER HEART WAS SO BAD SHE COULDNT GAIN ANY WEIGHT. AT 10 WEEKS AND 6 LBS SHE HAD OPEN-HEART-SURG. THAT WENT WELL BUT SHE HAD PROBLEMS COMING OFF THE VENT CAUSE HER THROAT CLOSED EVERYTIME THEY PULLED THE TUBE OUT. SO THEY TOOK SOME CARTLAGE FROM HER EAR AND PUT IN THERE, AMAZINGLY IT WORKED AND WE CAME HOME! IT WAS SUPPOSE TO BE A 7-10 DAY STAY BUT TOOK 7 WEEKS! WEVE HAD MANY MORE HOSPITAL STAYS SINCE THEN, ANOTHER SURG ON STOMACH AND ALMOST LOST HER TO RSV, AFTER 22 TIMES IN THE HOSPITAL AND A HARD FIGHT, SHE'S BLOOMING!!! AT 1 YEAR SHE WEIGHED 12LBS, NOW AT 16 MOS SHE 22!!! SHE'S STILL TINY FOR HER AGE, SHE ABOUT THE SIZE OF A 6 MO OLD, SO SHE DOES WHAT HER BODY ALLOWS, SHE STARTED SITTING UP LAST MO AND THIS MO ABOUT TO CRAWL, SHE CAN NOW STAND WITH HELP, AND YESTERDAY SHE LOOKED RIGHT AT ME AND SAID 'MOMMA' SHE HAS 2 BROTHERS AND A SISTER WHO HELPS HER ALOT, SHE GETS OT,ST,&PT, WHICH HAS BEEN WONDERFUL TO HER, SHE STILL CANT EAT BY MOUTH AND WE WOULD APPRECIATE ANY ADVICE ON THAT, SHE HAS A GREAT NURSE AND FRIEND COMBINED WHO CARES FOR HER 8 HRS PER DAY. THATS OUR STORY SO FAR, WE LOOK FOWARD TO THE FUTURE AND WERE GLAD THE PAST IS EXACTLY THAT. I,WE LOVE HER SO MUCH, SHE IS OUR EVERYTHING THAT GOOD I LIFE, AND WE THANK GOD FOR HER. KENDRA, WERE PROUD OF YOU, IN ALL YOU ARE, ALL YOU'VE DONE AND ALL YOU WILL DO!!!! SORRY FOR ALL MISTAKES MADE WHILE WRITTING, SHE'S HELPING....AND I'M TYPING ONE HANDED!!
I AM A 15 YEAR OLD FEMALE AND I LOVE DOWN SYNDROME PEOPLE I THINK THEY ARE SO CUTE AND FUNI PLAN ON WORKING WITH HANDICAP STUDENTS. WHEN I HEAR MEAN THINGS ABOUT HANDICAP STUDENTS IT MAKES ME WANT TO GO HOME AND CRY. I FEEL THAT THEY ARE NO DIFFERENT THEN US WELL MAYBE BETTER THEN US. I HAVE BEEN AROUND HANDICAP STUDENTS MY ENTIRE LIFE. A LOT OF MY FAMILY MEMBERS WORK WITH THEM. I WOULD LOVE TO KNOW A STUDENT IN EAST LYME CT THAT HAS DOWN SYNDROME SO THAT I CAN HELP THEM WITH ANYTHING THEY NEED HELP WITH OR EVEN TO JUST HAVE AS A FRIEND. AMMIE
Hi I am the mother of a 5yr old joy, Her name is Tracy Faith Dillon. She is doing very well, She has had no problems health wise. We named her faith because the doctors told me while I was 3mths preganant that she was dead,and that I would miscarry her. She is here with no complications and I went the full 9mnths, they were so wrong. She attends a School for exceptional children where she receives therapy and htis is really a blessing. i am so thankfull for tracy she is truly a joy in my husband and I life's , and also in the life's of her three sisters.
I WAS BORN WITH DOWN SYNDROME, BUT I HAVEN'T LET IT GET ME DOWN I LIVE WITH MY MOM AND AUNT AND UNCLE, I WOULD LIKE TO HAVE FRIENDS THAT HAS DOWN SYNDROME TOO! MY INTERESTS ARE SPORTS,AND DOING MY COMPUTER AND WRITING POEMS,AND READING MY BIBLE, I LIKE TO GO TO CHURCH,TOO! I WOULD ALSO LIKE FRIENDS WITH LUPUS TOO! CAUSE I ALSO HAVE LUPUS!
The birth of a child is a common miracle that occurs everyday. The birth of my first child was a day filled with great joy. This day was also filled with confusion and fearing the unknown. On July 16, 1997, I was forty weeks into my first pregnancy. The Dr. examined me and decided to have me come back later in the day to induce my labor. I went home, packed my bag and was off to have my son. There are different ways to induce labor and the one I encountered was very painful. Especially when the nurse had to put an I.V. into my hand. After the Dr. and nurses were through torturing me, the labor pains started. I was in hard labor for six hours with no pain medication, only to end up with a C-section. The anesthesiologist came to give me an epidural and I was off to the operating room. Within a few minutes my son was born and I heard a little cry. That was one of the happiest moments in my life. My husband tried to hold him up but I did not get a very good look. Moments later my son was rushed to the Neonatal Intensive Care Unit. With this being my first child and having a C-section, I thought it was normal procedure for the child to go to N.I.C.U.. I waited for what seemed like an eternity to hear something about my son. Finally, the pediatrician came to my room. I could tell something was not quite right by the look on his face. The doctor informed me my son might have Down Syndrome, because he had some of the facial characteristics. I was devastated thinking my perfect child was not so perfect. I did not get a very good look at my son and did not know what to expect when I saw him. The next day I was wheeled to N.I.C.U. where I finally was able to get a good look at him. My poor little man was swollen from water retention and had tubes everywhere. He looked so precious and helpless. He had a rough beginning, but he was still my perfect little boy. He lived at the hospital N.I.C.U. for the first nine days of his little life. Slowly the tubes came out and he was ready to come home to be with my husband and myself. Sometimes I reflect back to the night he was born and realize that I was blessed in more ways then one. My son has been such an inspiration not only to me, but also to everyone he meets. Whenever, I look at his big beautiful blue eyes, or he flashes his wonderful smile my way, I can’t help thinking how lucky I am to have him with me. Having my son has been one of the best moments in my life. He is such an amazing little boy and I am sure he will grow to be a wonderful man. He is a symbol of honesty, goodness and purity and I know he will continue to touch the lives of everyone he meets.
Eleven months ago an angel came to be my daughter; Gabrielle. At two months old she was reborn following open heart surgery to repair an AVSD and a leaky mitral valve. My wife Victoria and I were given back our gift from God via the magical caring hands of Childrens Hospital in Detroit. Gabrielle is the magnet of our family! Her four brothers and sister are drawn to her. Every day is a twenty-one-smile salute from Gabby. I'm truely blessed with such a wonderful family and am convinced that Gabrielle is an angel sent from His Grace our Heavenly Father.
I have just found this on my computer tonight and have been reading all the stories. I have laughed and cried with each one. I have a 2yr. old little girl with downs and like many of you we did not know while I was pregant. It came as such a shock. We cried long and hard for her not us. We had no idea what her life would be like. It accured to me one day that I had no idea what my other daughters life had in store either. Well needless to say, we have been blessed in so many ways. It has been a learning experience for the whole family,but a wonderful jorney this has been. Today when I think back to that day she was born and the news we were given,it seems like a life time ago. The heartache we felt has left me,just as the pain of childbirth itself. I look back and think , Why were we crying!!!! If we only knew how much like other childeren she would be,or the smile she has that can feel your heart with such joy that you think it may burst. We would of never shed to first tear. I thank God for both of my girls. Rebekah will always help us to stop and smell the roses and Bethany will always be the strong sister that she will need.To say the least our lives have been made a better place and our faith has been strenghtened. GOD BLESS YOU ALL
My story starts out with Robbie my 35 year old brother that I have always helped take care of but never really "Taken Care Of". My husband of 17 years left me 6 six years ago for another woman. I was so devestated and suicidal and you name it. Six weeks after this happened I woke up to find our mother dead in the bed. I was going through a double tragedy and suffered to no end. My guts were aching and my heart was broke with no hope of recovery. Robbie of course was to live with me and my daughter (teenager at the time)I never really KNEW Robbie until I was faced with the responsibility of it. I loved him and there was never a question about putting him in a home or nothing like that. He is so sweet and funny and loving and huggable. He made me laugh when times were down. He gave me a reason to go on. He has learned to do things that our mother never dreamed of him doing. He has a job at the local handicapped store. He goes walking with me in the evening. He never meets a stranger and he amazes me constantly. He has changed my life and gave me new strength. He has eased my pain about my mother because we both loved her so much. Some people may not can relate to this story but if you have loved a down syndrome person then you can! God bless us all who has been touched by these unique human beings! Thanks from Donna
Hi! I am foourteen years old and have been blessed to be able to be related to someone with Downs. My aunt of somewhere in her late 40's was born with Down's. It is kinda scary if you are young to be around someone that acts totally different from you. As some of you know, persons with downs are not as smart as we are. My aunt had an incident at the grocery store and it took away basically her freedom to live on her own. She was living an iin apartment by herself and that freedom was taken away because of her incident. She is now in one of those homes where people with Down's all live together. She is a very quite, yet loving person. She sticks to herself adn her favorite things to do. She has had a very steady job for a long period of time and haaas earned many awards for hard work nad dedication. There is a little boy that attends my church who was also born with Down's and he had to have a heart operation to repair the whole in his heart. He is one of the sweetest boys I know and he is always happy. Many people judge folks with Down's by their appearence. I probably would have also if it wasn't for my aunt and the little boy Ryan. They have huge hearts and are very caring. If you ever get to meet one you should pray to God and thank him for sending you the blessing of getting to meet one of these beautiful people; they are true blessings.
Hello i am aunt tomi mommy and i am going to tell you my story,Aug 10 1998 my big sister gave birth to her fourth child Jordan Lee he was the most preciose thing i had ever layed my eyes on and from the first moment i layed eyes on him i knew he was special and that i loved more then anything. We visited him in the hospital, spent hours holding him and kissing him. later that evening I got a phone call from my sister in tears saying that the nurses were saying there was something wrong with him and that they were running some tests on him we were alittle worried but the nurses asured us he was ok then another phone call saying they thought he was downsyndrome. I did not know anything about down syndrome and so I began asking and reading to find out what that meant and all i heard in the beginning was your sister gave birth to an angel i did not know what that meant then but god do i know now they were not lying. my sister had gone through some ups and some downs dealing with this people were constantly asking her if she wanted to give him up and as stuborn as she was she was not giving up her baby she would treat as if he was as normal as her other children.well my sister has a big heart and she tried but she was having alot of problems outside of being a mom and had give up her other three children to there father and she came to stay with me for a little while with jordan while she tried to overcome a drug problem and i jumped in and took care of jordan while trying to get my sister into a rehab program well i quickly learned that she was not ready to get help and that jordan was suffering in the process he was now a year old and was not yet doing any early intervention and all the focus was on my sisters problems and not jordans development so i had to make a very scary and difficult decision to fight my sister for custidy of her lil angel and to focus on him and let her deal with her own problems i was almost sure that something that dramatic would help her to get her life together and fight for her child. the court date came jordan was with me she had left him with me while she spent some time thinking about her life and what she needed to do he had now been with me for about 2 weeks i was already so atached and as nervouse as could be i was expecting the judge to give me temporary custidy while sentencing tracy into a rehab i was excited to see how much jordan and i could learn in the short time we had together i walked in to the court room with jordan in my arms i looked around all of my family was behind me my other 2 sisters my mom and dad they all knew i was doing the right thing hoping tracy would change her life we sat down i looked and could not see her dhe never showed up i was then granted perminent guardianship of jorden nov 9th 1999 the best day of my life althigh i was sa for my sister and very scared of my future i felt very strongly that i was doing the right thing. jordan is now 2 years old and he is my angel he is the best thing to have ever gappend to me i am only 22 years and was not planning on being a mom anytime soon but now i am a mother and i say that with such pride every little step forward that jordan makes fills my heart with pride and joy he is now walking and talking he also knows about 15 sighns and he thrives to learn more and more each day i wake up to his beatiful face every morning and think to myself how did i get so lucky he makes me laugh and smile everyday he is my nephew, my son and my best friend i have learned so much from him and would not change a thing if i could. AUNT TOMI MOMMY
I would like to tell you a little story. My daughter was 18 years old, pregnant and beautifull. We had been living out of USA for a few years when she got pregnant. She wanted to come to USA to have her child, and came to stay with my mother. Do to her age it was never expected that her 8lbs., beautifull baby girl had Down S. Just found out when Cynthia was born. Of course I came back to Florida to be with her, my husband will reunite with us a few month later since we had business to take care of in S. America. I want everybody that read this message to know that Cynthia is the most beautifull and wonderfull thing that ever happen to all of us, including great-grandmother, grandparents, aunts, uncles, everybody in the family. Cynthia had open heart surgery when she was 6 months old. (She is 8 1/2 years old now), and is doing great, goes to second grade in a special education school, and can do just about everything by herself. I also want to say that I think Cynthia's mother (my daughter)is the most wonderfull mother of all, thanks to her Cynthia is doing so well. We are very proud of her and want to say "THANK YOU, VIANKY FOR GIVING US CYNTHIA. GOD BLESS YOU". Your Mom.
I really enjoyed reading alot of the post tonight. Just wanted to tell a story about my daughter and a major milestone. She is only twelve and informed me that with her birthday money she just received she wanted to buy a bra and a CD of Brittany Spears!!!! Well we took a trip tot he local Walmart and got three. Bra's that is not CD's. she was so excited even though she doesn't have anything to support at all. LOL. She came home and wanted to show them immediately to her father who blushed as red as a tomato. She took each one out of the bag and posed behind them. My husband was so flustered but he was doing good just to be in the same room still. LOL she put one on in her room and ran across the street to show her friend and her friend came over and had the same exact bra on. After that they were twins according to my daughter. She wanted to bad to show her new bra to her boyfriend that she has in class and it took alot of convincing to get her not too. I told her if she had to tell her friends. Only girls she was to whisper in their ears. LOL. she giggled. I thin she is barely containing herself with excitement over this new grown up feeling. Just thought I would share a funny story. Mary
I wanted to get parents thoughts on weekends with friends homes. For those who may not know what they are, it is a home where children with disabilities go for the weekend to give there parents a break and also for the children to get out and do things that their parents may not have time to do with them. I am planning to build a place like this on our property, I have a nephew, who is ten and has downs. And I know how much my sister appreciates it when he goes, because she has two other boys, and sometimes it is hard to spend time to do the things they like to do to. since Jordan (my nephew) can be very stuborn at times. I know in this area there is a 2 year waitng list, we have a great location for building, we have a farm in which we make maple syrup so the children would have the bush to learn and play in and we have horses. I hope that parents can e-mail me and give me there opions, Thanks. Jen
I become so angry when I hear this. " Thank God that I dont have to go through it." Why? When I was a child I asked God? Why am I here? What is the meaning of life?? Probebly most of you have asked this question. Well I think that He has given me an answear. I wanted so badly to express my feelings when I saw, how unfair people could be. Why did they kill Jesus, Because he was diffrent, and because he was a problem! Because he told them who he was and didnt lie. Just like our children. they dont lie to us who they are when they get born, they dont want to disturb us. They want to hug us. But still, we refuse them. Just like when we refused Jesus. They want to take us places and show us things. They have a special world to show us. Something that we will never see, unless with their help. Since my son got born I have seen a little bit of his world. He has taken me to other childrens home´s. Which I would never have gone to without him before he got born. I have seen the most innocent world and his most innocent face always cheers me up when he smiles to me. Because everything that I am worried about dissapears in that moment. He has given me the key of life. And I want to give him and all the other Downs children this poem: Once I was a child I was walking in the wild wishing all this people could try to be more mild everybody shouting and nobody would care that maybe someone out there is someone who would dare Tell me are you hungry do you need to find a way to raise your hopes to heaven or just leave and walk away. I can tell you one thing and that is all I know that if you never try it nothing will ever grow Put your heads together and take your neighbores hand at least you can with friendship beginn to grow this land
Thank God that children with Ds. mostly get parents who wants them. It is very importnent for them, so they may grow and learn in their ability that the already have. But they really need someone who wants to take this job and do it with interest and unconditional love and non slothful intendment because that´s what they give to us. We who,we call the intellegent of the nature are sepose to motivate them. We are the selfish one who like to have them as easy as possible because we dont have the time to slow down, in the eagerness of getting what the next neighbore is havining. Be proud of your children because they teach us the meaning of life!!!!!!!!!!
THANK GOD THAT I MYSELF DO NOT HAVE ANY CHILDREN WITH DS. BUT HE PUT SOMEONE ELSES CHILD INTO MY LIFE. HIS NAME IS JACK & HE & TWO OTHERS LIVE IN MY HOME, BUT THEY DO NOT HAVE DS. THOSE TWO ARE MENTAL RETARTED.AS A CAREGIVER FOR JACK, TAKING TAKE OF HIM IS BOTH HARD & FUNNY AT THE SAME TIME. LIFE TO JACK IS HIS WALKMAN & BELONGING TO A FAMILY UNIT & MOST OF ALL FOOD.
JACK IS THE HAPPIEST WHEN LEFT ALONE WITH HIS MUSIC, BUT THERE ARE TIMES WHEN HE DISMAYED IF HE IS NOT INCLUDED(AS HE THINKS)IN HELPING WHEN HE IS NOT BEING LAZY.
JACK ALSO LIKES TO WRITE NUMBERS & LETTERS & HE IS VERY GOOD AT PLAYING VEDIO GAMES
IT HAS BEEN VERY REWARDING HAVING JACK & THE OTHERS LIVING WITH MY HUSBAND & I IN OUR HOME.
I DON"T HAVE A DOWN SYNDROME CHILD . BUT I DO HAVE ONE WITH NOONANS SYNDROME. AND SHE IS JUST AS SPECIAL AS A DOWNS THEY TOLD ME SHE WILL NEVER BE LIKEHER BROTHER OR TWO SISTERS. WE ALL KNOW THAT SHE HOLDS A SPECIAL SPOT IN ARE HEARTS .BESIDES NOONANS SHE HAS EPLISEY AND PTSD SO WHEN SHE DOES SOMETHING LIKE JOIN ROTC OR GET A GOOD GRADE WE ARE PROUD OF HER . HER GREAT GRANDMOTHER TAUGHT HER HOW TO CROCHET AND MAKE LITTLE BLANKETS. SO TO HOW EVER GOD GIVES U ONE U ARE BLEESED. THANKS FR LISTEN TO ME IF U ARE WONDERING WHAT NOONANS IS THEYARE LACKING THE NO 12 CROMAZONE
I am just stumbling onto Down syndrome web sites today! I have registered with MDS site and now I have found this one. It is amazing what you can find on the Internet.I have Mosaic Down syndrome. I am thirty nine and live with my parents here in Texas. I don't know if anyone would be interested in me being on this web site but I thought it might help some parents.
My earliest memories were in school when I had to have extra help in with my school work. It seemed no matter how hard I tried I just couldn't keep up. My parents were very instrumental in helping me during my school years. Middle School and High School was hard but I had wonderful teachers. My mother was always making sure my teachers knew about my problems. I have vision problems and this went along with my learning. I had to sit in the front of the backboard. Sometimes this could be a problem. I have Rapid Eye and am I am near-sighted. When the teacher could see that I was not able to see they would ask students to move and sit some where else. This could of created a problem but most of the time the kids didn't seem to mind. I graduated with my class in 1980. I was nineteen. It was the biggest day of my life. My parents were told I would not graduate. I must give credit to my parents because they never gave up on me.
My biggest strengths are reading and writing. I love to read and I write in my journal from time to time. I don't know if I can help anyone but I am hoping I can pass something on to the parents in some way.
I was pregnant with my first child when my husband and I were given the opportunity to have the AFP test to test our risk for birth defects. We thought this was a good idea even though we were explained to that there was a chance we would get a false positive. If we got a negative, which we were sure we would, we would feel sure our baby would be born healthy. I didn't give it a whole lot of thought. The odds seemed so unlikely. Then one day while my husband was at work I got a phone call from my doctor telling me that my test had shown a high risk for Down's Syndrome. I was upset at the news, but again, remembering the chance of false positives my doctor had warned me about, and knowing that I was only 20 years old and had no history of this in my family, I was sure everything would be okay. I was scheduled for an amnio and went to have that done. Again the doctor called while I was at home alone. She told me that my baby, my first baby, was a girl. I was ecstatic! Then she told me that my little girl did have Down's Syndrome. I was so upset. I called my husband at work and he came home. It wasn't that the news changed our love for our baby, but we felt hurt for her knowing that she was not healthy. We consulted our doctor who asked us if we would like to terminate the pregnancy. My husband and I had never even considered that. Our answer was absolutely NO! The doctor recommended we have a special utlrasound with a fetal cardiologist to check for heart defects. We were told babies with Down's Syndrome had a 50% chance of having a heart defect. 50% -- again we were hopeful. The ultrasound, however, showed that she did have a heart defect, which was essentially a hole in her heart. She would have to undergo heart surgery in her first year of life. By now the bad news was getting easier to swallow. We could handle this. We focused on this blessing of a child we had been given and the fact that she would be here in our lives in a matter of months. We gave her a name, Dalia Rose. This name was very special to my husband and me, and we were very happy to give it to our special girl. On my 6 month doctor visit, my husband was there with me as we waited for the doctor to find the heart beat for us to hear. She was having trouble with the machine so she asked us to go into another room that had a complete ultrasound machine. There she began to look for the heartbeat again. The longer it took, the more worried we became, until she finally looked at us and said, "I'm sorry, there's no heartbeat." My husband and I broke down in tears. We lost this baby we had already gone through so much with. My doctor explained that we needed to induce labor either today or tomorrow. I knew that if I went home with my baby still inside me I might not be able to make myself come back just so they could take it from me. We went right to the hospital and began the inducement. The medicine made me very sick and took several hours to start labor. I had my husband there and a lot of my family with me. Finally when the labor began, it was over in 20 minutes, and my baby was delivered stillborn. The nurses took her and cleaned her and dressed her in preemie clothes that still hung off of her body. Then they gave me my baby to hold. She was only 9 inches long and 11 ounces. My family and I got to spend the better part of an hour with her, holding her for the first time and saying goodbye at the same time. The staff was so wonderful. They took her picture so I can always remember what she looked like, and they gave me the outfit they had dressed her in along with her birth certificate with her tiny footprints. They gave me the only momentos I would ever have of her. The next step was planning the funeral. We had a full service and burial for her, and picked out a heart-shaped tombstone with her name and birthdate and the inscription, "our precious little angel." It was a very hard recovery, emotionally, but the one comfort I have now is that I do have an angel of my very own. She would be 2 1/2 years old now. She has a baby brother here on earth and another one on the way. Since my husband and I do not carry the gene for Down's Syndrome, we are still able to have healthy children, although each pregnancy gives us the same concern. Still, it gives me great peace to know that each time I am concerned for my babies, she is there watching over them and protecting them. Dalia Rose will always be our firstborn. She will always be a part of our family, and her brothers and sisters will know her. Every time I see a child with Down's I am reminded of her and overwhelmed with compassion and love. I know that she expanded my heart and gave me this extra love and compassion for special children, and I am so grateful to her for that.
My first daughter, Gabriela, was born with Down Syndrome. Although I was really upset after my husband and I got the final confirmation that Gabriela really did have Down Syndrome, I knew that having her was meant to be. I remember as a child (& young adult) being so drawn to people with Down Syndrome. I thought (and still think) that people with Down Syndrome were so beautiful. I knew early in life that I wanted to be involved in working with people w/ Down Syndrome. I remember telling my family and praying to God that I would have a child with Down Syndrome. To me, having a child with Down Syndrome would mean that my child would be beautiful and unique. During college, I got a job with MHMR and worked in group homes for adults w/disabilities and eventually became coordinator for a vocational program where I am still employed. At work I began to grow very close and grew to love a beautiful woman w/ down syndrome named Diana. Diana unexpectedly passed away when I first discoved I was pregnant. I decided that Diana would be my guardian angel and that I would name my child after her if I had a girl. During my pregnancy a friend received AFP results that showed that the child she was carrying could have down syndrome. She was hurt and turned to me for comfort. I remember feeling hurt for her but I assured her that a child with down syndrome was special and could grow and learn like everyone else w/ extra help. I did not test in my pregancy because I knew I would be happy any child God gave me. Of course, I really didn't think my child would be anything but healthy. Gabriela was then born to my surprise with Down Syndrome. Her full name is Gabriela DIANA of course. After the pain and depression subsided, I realized that my life was completely planned for the birth of Gabriela and she has completed changed me for the better. My family has learned from her what is real and what is important in life. She is the complete epitome of what good. Her love is pure and unconditional. Her acheivements are special because she has to overcome so much more than others and work so much harder. Nothing is taken for granted. She has made me a far superior person and mother than I ever thought I could be. I can do anything in life because she inspires me and she will do alot in life because I will ensure she has the opportunity.
I am 15 years old and I am currently working with a child with downs syndrome. She is 4 years old and she is like a younger sister to me. She is very forunate because she is a twin, her sister does not have downs, but they are the best of friends. I see her twice a week and spend time with her and her sister. She can communate so well with me, at first it was a bit hard, but now I understand about 3/4 of what she says. One of her favorate things in the world is "Barney" and when ever she is sad we put on the vidoes or get out her electronical Barney. When ever she wishes to watch Barney she will say "Baeney Curcus", or Barney Zoo." She also goes on the comptuer and says to me what games she wished to play, and points to me. One of the things I love about her is that she is very patiant. When ever she is trying to tell me something I will repeat is so I know what ever she is trying to say, If I am worng she will keep saying it tell I get it right. I my heart she is a wonderful child with lots of friends and a family that loves her very much. She is a very lucky child to have a family that does so much for her, and I am glad that I have the opertunity to share that with her.
Jasia Brieta was born May 6, 1996. We didn't find out that she had Down's until October 1996! She was very strong at birth and I had a healthy pregnancy. When she was two months old, we found out that she had a heart murmur. We were sent to a pediatric cardiologist and found out that she had a hole in her heart. He suggested that since it was suspected that she had Down's that we get her tested. It was confirmed-she has Mosaic Down's Syndrome. That was never a problem for us-we never had any trouble accepting our beautiful daughter! Neither did anyone else in our family! In fact, my mom told me that she can remember that I told her when I was young that I wanted to have a baby with Down's Syndrome! Jasi had surgery April 29, 1997 (one week before she turned 1) to repair the hole in her heart. Everything went well during the surgery. She was recovering well and was about to be moved out of pediatric intensive care when she began to have seizures. She had to stay in PICU while the doctors ran tests to figure out why she was having seizures and to find the right kind of medication for her. The swelling from the surgery had caused her brain to swell and was putting pressure on a microscopic "bad" place in her brain. She came home from the hospital on May 5, 1997. She was on a lot of medication and vitamins. In September 1997, she was taken off the seizure medication, but actually she never had a problem after we left the hospital. In April 1999, she was diagnosed with asthma and we got an inhalation machine. Jasi is a beautiful 4-year-old who loves playing with her handsome 6-year-old brother, Elias Ramon. He has been very good for her, as the geneticist told us "He only sees his sister, he doesn't see that anything is wrong with her!" (Neither do we!) She began walking (in 1998) because she wanting to chase after him to see where he was going and what he was doing! The latest news is that she recently got glasses to correct a slight eye crossing problem. She looks so cute in them! Although she has her health problems, we have never treated her any differently from her brother. She has to pick up toys and not throw "fits" just like him. We get comments from others about how well behaved they both are out in public. We love both of our children very, very, much and we don't know how we ever lived without them!
I am proud to say that I was blessed with an angel. At the age of 24 years old I gave birth to my fifth child. My darling angel, Serbena. When Serbena was born 29 years ago I knew that her features were different from those of my other children, and I also knew that my friends and family members noticed the difference. I was not familiar with the the characteristics of a Down Syndrome baby. I was born and raised in Detroit, Michigan, and before Serbena was born I do not recall ever seening a Down Syndrome child. The doctors did not tell me that Serbena was born with Down Syndrome until her six week check-up. I sometimes wonder how I drove home that day from the hospital, because I was in total shock. The doctors informed me that Serbena would probably be unable to perform any type of functional skills, on her own. I was determined to prove the doctors wrong, and with God's Grace my family and I did. I enrolled Serbena in the Detroit Public School System when she was three years old. Serbena was walking and potting-trained, at the age of two. Her father, older sister, and three older brothers showered her with love and the support that she needed to develop her learning skills. Serbena will be thirty years old, on November 6,2000, and we are planning a grand birthday celebration for her.
When I was a senior in high school, I already had a three year old daughter, I lived alone and I was pregnant with my second child. I had felt lonely and mainly more like an outsider. I started looking for a church to become a member of when I finally found the church I was looking for. I became an active member of my new church and for the first time in my life I felt like I was "happy". Then on January 1988 I gave birth to my second daughter Renee. Renee was born with Down Syndrome and I was devasted. I was so upset with God that I wondered why God was doing this to me. Had not I suffered enough. Here I was a teenage mom, still in school, living alone, working part time and now with a baby with special needs. I thought God was suppose to be glad that I was now attending church and living for "Him" and here he was paying me back giving me a child with "Down Syndrome". I cried everyday for a whole month, that I couldn't breast feed Renee. That was 12 years ago. Renee is the center of my small family's life. I love her so much, that she has not only been my daughter, but my teacher as well. She's great, funny, silly, smart and although she doesn't talk (she's not deaf) she communicates with us in every way possible. As time goes by I realize that God wasn't punishing me by giving me a daughter with special needs, but blessing me with a daughter with Down Syndrome.
Anyone out there with experience dealing with leukemia in their child please write me. We just got home from the hospital after a 12 day stay for newly diagnosed acute lymphocytic leukemia. Lia is 20 months old. Our one week marrow was great. No blasts.
my brother has downs, and he is 17, healthy, and fun. his name is ernie, and ernie is alot to handle, he imitates all the movies and shows he sees,so he gets in trouble all the time, but he is very cute and very loving.!
I was 23 when I found out that I was pregnant. I was very excited and scared my baby's father and I had just split up so I knew I would be going through this alone. I had tried to prepare myself and I knew with the love and support of my family that the baby and I would be just fine. I took all the tests and everything checked out fine as far as I knew. Then in August for my birthday my doctor scheduled my ultrasound I found out I was going to be having a boy. I was so excited we didn't have a boy in our family and since I was single I gave him my name and I couldn't wait to hold him. Then the next weekend a friend of mine got ahold of me (she worked at my doctors office) and said the doctors wanted me to call as soon as possible. That didn't sound good to me and I stressed about it all weekend so Monday morning I called and was told that the AFP test came back and I tested high risk for carring a down syndrome baby and they schedule and appointment for an amnicentisis that afternoon. I was scared to death, my mother went with me and she was wonderful. The doctors told me everything and went ahead with the procedure they told me it would take two weeks for the reults then I would have one week to decide whether or not to terminate the pregnancy. I cried for three days then I decided that I wouldn't worry about it because I was probably causing more harm to the baby. The second week I called the doctor everyday to find out the results. That was the longest week of my life, finally on a thursday the doctors called me and said "your baby boy is absolutly healthy" I dropped the phone and just cried. It was over.In January I gave birth to a healthy baby boy. To this day I do not think I would have been able to terminate my pregnancy and i will probably never take the AFP test again. If God intended me to have a "special" child then I would be proud that He thought I had the faith and strength to raise a child as all of you have. Thank you all for giving me a place to tell my story.God Bless You All.
I have a grandson, Timothy, Jr. He is almost 13 months old now. He seems just like his older sister Imani to me. When she was younger she became very attached to her parents. Me, the grandmother, she had to warm up to. Now that she is older, almost 2 1/2, I am one of her favorite people in the world. Their father brought them over for me to watch them for awhile one Saturday. Imani came in with her usual smiles and hugs. Timothy, Jr. came in and immediately started to cry and to push me away. His father had went back out to bring in their things. The moment his father came back into the house, he laid his head on my chest and pretended we were the best of frieds. It was very funny to me. After his father left, he complained for a little while again and eventually we became friends.
HI,my name is Irma,I am 27, and I just had my 2nd miscarriage two days ago.I was really depress,and crying because besides having a miscarriage , I knew that my baby had the drown'syndrome.Of course, I didn't know what to say; I was really afraid of getting pregnant again(I have no kids)because I didn't want to have to deal again with everything.But after I found this website I have found so much relieve and peace.I know I need some help righ now,but I know with the help of God, reading your stories I will stand up again. God bless you all, and give you the strengh that you all need.I wish I could have the courage that you all have.
HI,my name is Irma, and I just had my 2nd miscarriage two days ago.I was really depress,and crying because besides having a miscarriage , I knew that my baby had the drown'syndrome.Of course, I didn't know what to say; I was really afraid of getting pregnant again(I have no kids)because I didn't want to have to deal again with everything.But after I found this website I have found so much relieve and peace.I know I need some help righ now,but I know with the help of God, reading your stories I will stand up again. God bless you all, and give you the strengh that you all need.I wish I could have the courage that you all have.
I DONT HAVE A DOWNS CHILD. I DID HAVE THE PLEASURE OF TAKING CARE OF THE MOST BEAUTIFUL LITTLE GIRL. IT WAS FOR A SHORT TIME BUT IT TOUCH MY LIFE IN WAY I DIDNT KNOW POSSIBLE. SHE HAS TWO OLDER SISTERS THAT DONT HAVE DOWNS AND THEY ARE SO BEAUTIFUL ALSO AND ALL THREE ARE SO SMART AND JUST WONDERFUL TO AROUND.IM NOT SURE EXCATLY WHAT IM SUPPOSE TO SAY ON HERE. I DO KNOW HOW BLESSED HER FAMILY IS TO HAVE HER. SHE LIGHTS UP THE ROOM. I LOVE HER WITH ALL MY HEART. ( I LOVE HER SISTERS TOO) THE WHOLE FAMILY IS JUST WONDERFUL.
My son Matthew has Down Syndrome, and turned one year old on July 26th. Perhaps it’s time we shared our family’s story. Just twelve short months ago we could have detailed it on a single sheet of paper. But now it’s clear that God devised a storyline for us long ago, and we’ll probably never find space or occasion to tell it all. About Matthew’s Family Matthew is the young son of a quiet, 30-something couple in North Texas. He shares my eyes, his mother's smile, and his grandfather’s middle name, but Matthew’s spirit is unique: a force that tugs at the heart of everyone who sees him. Despite the many surgeries he’s endured — and the challenges before him — Matthew seems to embody all that is good. Please read the full story on our website "Matthew's Life". We hope you'll find something encouraging there, and sign the guestbook if you get a chance. We intend to share it with him one day. The website is at: www.matthewslife.homestead.com You can go straight to our story with the URL below: http://www.matthewslife.homestead.com/files/matthewslifestory.htm
I don't have a Down's baby, but my bestfriend does. E-Lynn was 25 when she had Anthony(Dec. 17, 1999.) E-lynn and I come from a small town where people don't really know to many people with down's. E-lynn is having an extremely hard time dealing with this. She quit her job to stay at home with him. She rarely gets out byself or with the baby. I was wondering if anyone has any advice to give me or to her? I'm just worried about her and about Anthony. I would do anything in my power to help her. She is my bestfriend in this whole entire world.
After a friend told me about this website, it has taken me 4 weeks to get enough (courage?) should i say to write my story. It starts back when i was 10 and had to care for 3 brothers and a sister. Being put in a position to where you are the parent and you are still a child yourself pretty well makes up your mind you are not having kids and that was my resolve for all of my life. NO KIDS! After dating in high school, and surviving my disfunctional childhood, I married the first guy that made me laugh instead of cry. He completely understood my ultimatum. NO KIDS! When the marriage didn't go the way i wanted to I left, and for 6 years moved along the south and basically sowed alot of wild oats(to put it mildly). I stayed with my sister some who has three kids and confirmed my convictions of NO KIDS! After moving back home after a break up I met a man who literally swept me off my feet and guess what? He had 3 kids but when lust/love sets in you are hooked so there I was, paying the bills, taking care of his three kids while all along he was seeing his ex on the side. I'm outta there!! but there's a catch. I'M PREGNANT!!! Obviously he doesn't want anymore so now I am in a predicament. Me, the one person who never wanted kids am stuck single, pregnant and living with my mother. Decision made to give baby up for adoption , I get my mind set to go thru pregnancy, give baby up and go on with my life, no problem? One fine day a gentleman pulls up in my driveway to see how I am doing, takes me for lunch says goodbye. Comes back the next day, takes me to lunch and says see ya tomorrow. Comes back and takes me to dinner at a mexican restaraunt because he has noticed how i crave guacamole. While sitting at the table begins to ask what my plans are for the future. This goes on for a month and as I am entering my ninth month, takes me back to the same mexican restaraunt and promptly announces he wants to be a family. Me baby and all. My answer/ NO!NO!NO!NO! Just want to be clear I said no. But he won't take no for an answer. It is hard to be strong when you are 9 months pregnant, swollen like a beach ball and you have this man wanting to whisk you away and take care of everything so I said yes one night and to quote him"I will never let you down". That was 9 years ago, the man who walked into my life and the life of my daughter "Madison" was my estranged husband. We never divorced the whole time I was out "sowing my wild oats". He claims he never stopped loving me. The night my child was born he was there. Through my C Section, the news that she had DS and Hirshprungs, and ASD/VSD, and Jaundice. Through the emergency surgery at 6 weeks that almost cost her her life because she became septic and infected her own blood stream, through the open hear surgery to repair her holes, thru the repair of her colostomy and to date 14 sets of tubes. Me the woman who never wanted kids who at times wanted to go to sleep and never wake up, who wavered at the thought can I handle this? who looked at other peoples kids and thought, now i know what God's anger and wrath brings forth had this child who needed so much. My husband Tommy never wavered, never stepped off the road he was walking and never, not once! ever mentioned that he was not Madison's biological father. When i write this letter i look back at all this and praise God that he let me go through that. If my child had been born "normal" i would not have learned patience, humility, respect, kindness, joy, self-control, wisdom and UNCONDITIONAL LOVE. This little girl of mine has showed me what overcoming life's hardships with a smile is all about. The Lord up above knew exactly what he was doing when he placed her in my womb. He knew how enriched he was about to make my life and how your own life doesn't seem to matter much at all when a little child with "fancy eyes" looks up at you and for the first time says "Mommy" . But most of all God put a man in mine and her life that makes us truly believe that there are fairy tale endings and happily ever afters. We live that story every day. I want to thank him for being there for us and never letting us down. We don't know how much time we will have with Madison (after all God is just letting us borrow her for awhile) but every day is a blessing and I can not imagine my life without her. I am so very blessed!
HATS OFF TO ALL OF YOU. I am so impressed by your beautiful stories. I too was told my last of five babies would be down. She turned out fine, but I went through the nine months of trying to sort it out, so when I stumbled across your website and started to read your stories, it touched my heart. You are all so brave and strong, and I admire you. I too was going to love her no matter what. I know some people that would rather abort then kept this precious type of child, but you guys did it, you met the challenge and still are meeting it!!!!!!!God bless all of you and your families. You are very blessed people and it was a privilege to read your stories. Never give up in your struggles. I know God will bless you and your very special child. Jan Avena Eshleman
Hi my name is Margaret and I'm 24 years old I'm married to my great husband who's name is Jose and we have two beautiful little girls. The newest addition is already going to be a year and our oldest daughter is going on 5 now, and she has Down Syndrome she is the best I would not trade her for the world. I was only 18 when I had her and we didn't even know she had Down's. The day i had her I had to have an emergency CSection and the moment she came out my husband started filming and on the tape you could see them checking her for all the signs the toes,the line on her hands, her eyes and etc. We had no idea what was going on being our first and not thinking nothing could go wrong. The next day the doctors came in and told us that there might be a chance that she had Downs, my heart broke and my as well as my husband, Well weeks role by and we finally found out that she did have Down's (Triosmy 21) Well the things that run through your mind I blamed myself for a long time but then I learned that it wasn't my fault nor my husbands we had to except it cause she was ours and we made her the two of us she was our blood we always say "God gave her to us for a reason" and that reason I believe is cause we are two strong people who had all the love in the world for our "Daughter"!! Well Irene is now 5 going on 6 in a few months she is doing great no meds her heart is great and she will be going to regular kindergarten and she is the big sister and is the greatest joy in the world she can light a room up when she enters it and she is our little entertainer thanks for listing to my story and letting us share it you.
Hello my name is renee and I have a little sister Ebony who has Downsyndrome. My mother had my sister when she was 35 years-old, and at 81/2 months pregnant. Ebony was born on 5/29/91 the doctors did'nt tell my mom that she had downs until the next day, My mom was pretty upset but said that Ebony was her baby and she loved her anyway. Well of course the doctors told my mom that ebony would'nt walk or talk and do things that qoute unqote normal children would do,But Ebony proved them all wrong. Ebony is now 9 years-old and doing great, she is the love of my life,the sun in my sky, and the joy of my world. Ebony makes me laugh with some cutest little things that she does.I love her with all my heart and i would'nt trade her any so called normal kid on earth.
My daughter was born with Downs on October 22, 1998. She weighed 8lbs 14 oz and was the cutest little thing. I didn't find out she had Downs until the next day. I was shocked. I am only 18 years old and I am wondering why I had a baby with Downs. I though only older couples or people with the gene had this happen to them. Well, doctors did some genetic testing and they found out that I have all the material of 23 chromosomes but, one pair of my chromosomes is connected, so I only have 22 chromosomes. (I can't remeber if it is 23 or 46) So when conception occurred, the chromosomes divided and gave my daughter an extra chromosome and that turned out to be Downs. (If this has happened to any of you, email me, because this is very rare) Anyways, my daughter had a small murmr and it wasn't thought to be serious and as far as I know, it is gone now. She also has bad eyesight, she is a plus 7 farsighted. I just recently got her to keep her glasses on without taking them off. I am hoping her eyesight improves. She is crawling around and getting into everything now, and will soon be walking. She has funny since of humor, (just like me). She laughs at everything I do and she loves to clap (patty cake). She also loves to listen to music and her favorite movies are veggie tales. I love her sooo much and couldn't imagine life without her. I had a hard time dealing and coping with the news of her downs, it was easier to handle when I found out nothing was seriously wrong. If you have any comments/questions, or are a new parent, email me,I'd like to hear from you and what you thought about my entry Jamie
Wow:( Just clicked the Message board tag at the top of the page and it took me to the old board. That is okay when you get there just hit the tag in the middle to take you to the new message board. See ya soon I hope:) Ro
Thanks for sharing:) I see alot of new faces and wanted to invite you to the MESSAGE BOARD. We share day to day experiences, ask questions and share information about our children. We laugh and we cry but we do it with the support of alot of parents, grandparents and friends who live day to day with similar circumstances. I post this because I see alot of unanswered questions. If you are interested in looking the message board over: here is the addy: http://www.unomas21.com/vizbook/vizbook.htm Or you can go to the top of this page and hit message board. Hope to see ya there:) Ro
Ann here again! Our computer crashed right after I posted. I had the brief chance to read a few messaged sent by some of the beautiful people who responded to my previous post.I did not get a chance to respond to anyone, so I wanted to say thank you here for all or your kind words. I would love if you could re send your messages! I am so sad that they are lost in cyberspace! I'd appreciate any correspondence! I continue to read this site and remember my precious Bryce. Thanks for sharing your stories!
My neice DeeKota is 11months old today she weighs 13pds 12ounces she was born with ds. DeeKota is the most precious child I could ever ask for in my life. She's always happy and full of smiles. No matter what's going on in my life I have to just see her smiling face and nothing else matters. Deekota knows how to play pattycake by clapping her hands and drinks out of a straw. She is doing really well. I was so glad to get to read other stories about ds children because you learn things to exspect and am glad you shared them with me. THANKS
Hi! I'm writing about life with Micah. Micah is 11 and has an older brother (16) whom he idolizes. Our family can't imagine life without him. (I add that for families of babies with Downs!!!) We have been through the health traumas which come with Downs, most particularly a very serious heart defect, repaired at 5 months when weighing less than he had at birth. Micah has never been in a "self contained" setting. Early intervention came to him, he attended preschool with nondisabled peers and has been fully included in public school. He will be a fifth grader next year. Micah is very well spoken. He reads at nearly grade level. His physical needs are many. I have been a professional advocate (yes, paid for this grief and joy!) for several years. Recently, I completed my master's degree in special education...something that I would not have done if Micah were not in my life! I have always valued the input from my own mentors and would appreciate hearing from those who have children in middle or senior high school who are fully included. I need to strengthen my resolve! Thanks!
A Testimony of Faith by, Barb Skubovius 1 July 00 This is a story about our precious 2 3/4 yr old daughter, .. who by all medical logic, should not be alive today. Just before her birth, not expecting any problems, some friends prayed over me. Two friends sensed God saying: “Barb, your heart to evangelize is going to be multiplied through your children, I am raising a mighty army for my kingdom through your womb.” ”Don’t be anxious, my hand is on this baby & this delivery.” & "Barb, you were out from underneath My umbrella of protection for a while, but now you are back under it, & it is going to rain & pour, but I will extend My umbrella & see you through it." ….. I could never have imagined what was ahead. She was born 8/24/97 - full term, 7# 9oz, but purple & immediately transferred to Children's diagnosed with an AV/SD heart defect, … (It was Pouring!) Considered stable, she went home to grow to hopefully reach the desired size for surgery .. she never learned how to nurse, so I pumped my breastmilk. Now 10 days old, we finally chose a name from a long list of choices - Faith Elizabeth. ... (A day after Faith was born, a distraught friend on her knees, humbly crying out to God for understanding, said this happened: A presence ran into her & she was terrified. Then she heard - "Do not cry my child. I have not abandoned Barb & Howard. The adversary will try to hurt those who walk so strongly in the path of my son, but I can & will protect them. They will name the baby Faith. & She will be a symbol of Barb & Howard's love for each other, for this child & for the work & will of Jesus Christ. Out of this Barb & Howard will grow & become strong & many others will be drawn closer to Jesus Christ! have Faith, have Faith, have Faith!" ... This friend immediately felt a peace come over her but didn't phone us to share this word until 2 wks later. She was embarrassed that she hadn't even known we were expecting & doubted we would believe her (for it was the first time she had ever heard God speak to her!) plus she didn't know how she could convince us to rename the baby (assuming we had named her something else)! She was shocked to learn we had actually named her Faith & that it took us 10 days to choose the name, which was 8 days after she got that word from God! Pretty awesome? .. Only confirms, God’s sovereignty .. live or die!) Within 2 wks, her heart was failing & liver enlarged .. (they put her on 2 diuretics, which made her pea continually so they ordered a calorie enhancer to mix with my milk which gave her diarrhea!) An emerg surgery was scheduled for 10/31. We began tube feeding her through nose. I began thinking she was going to die in my arms at home, as I watched her burn all her calories just breathing & thought others would be drawn to Jesus through her funeral! Our pastor rebuked my meditations of death & prayed LIFE would be how Jesus would draw others, not death! 10/24, she was in the ER, dehydrated, only 7#-3oz, respiratory infection, only 8 wks old! She waited 3 wks on a ventilator, while they hoped she'd gain weight to increase her odds of surviving the emerg open heart surgery. But it didn’t happen. Finally her surgeon said: "if we don't do it now, she'll die anyway." She was still malnourished (still below birth wt now 11 wks), with 3 infections in trachea & swollen (unbeknownst to us, her liver had shut down & she was spitting up blood). Docs in OR were heard saying “she won’t make it off the table.” (The PICU expected her to come back on ECHMO, if she did survive) .. But the Lord heard our cries! We had 15 friends gathered in the Surgery Waiting Rm 11/14/97, with such a peace, praying almost continuously for 6 hours during that surgery (many more interceding elsewhere). The surgeon seemed amazed she survived but warned us that he didn't know if she could make it through the night because she was still bleeding badly. Someone called our church (Vineyard Christian Fellowship, Cooper Rd), who happened to be having a Healing & Worship Service that very Fri. eve, & about 350 people corporately held hands & prayed for her bleeding to stop. The next morning, bleeding had stopped! The assisting thoracic surgeon, said 3 days later: “She looks remarkable” Me: “Heard you were pretty nervous?” He: “We didn’t even think we should be operating!” Me: “Why?” He: “Because of her liver!” Me: “Why?” He: “That’s why we had to cut her arm to gain access to an arterial line!” Me: “So, would you say that God was in that operating room?” He: “Most definitely! It was nothing we did!” I can’t even guess the number of prayers lifted up for her. You can ask any of the doctors there at Children's Hospital if Faith should have survived her long ordeal .. 95 days on the critical list! Her chest was left open for 5 days until the massive swelling receded & when they closed her sternum, she arrested but the pacemaker restarted her heart, & she never got staff infection during that open chest timeframe (where they were hourly changing the bloody dressing that first 24 hours) ... One day she had pneumonia, next day it was mysteriously gone. She got a yeast infection in her blood (after the surgery) but it never grew vegetation on any of her organs, particularly her fragile heart! She was surrounded by RSV yet never got it. She had continual diarrhea yet never got roto-virus. Her mal-absorption caused the docs to test her twice for CF, which twice came back negative. It goes on & on ... 95 Days Restrained on Ventilator & Held only 17 times! (Studies prove that babies die from not being held!) Interestingly, 8 other cardiac babies (that we knew of) died while Faith struggled to survive there in the PICU. None of them were malnourished like Faith & none of them had Down Syndrome like Faith. Surely God values His creations by different standards than we. For it seemed, no matter what they did or didn’t do, we experienced "unexplainable" grace on Faith! Psalms 139: 13, 14 & 16 says "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully & wonderfully made; your works are wonderful, I know that full well. ... your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Those first 6 months, I was regularly on my knees, petitioning God for mercy, healing, strength & courage .. sometimes minute by minute, drawing me only closer to Him, for which I am forever grateful. Even though I knew He could hear me, my husband & I searched our hearts in repentance, even asking forgiveness for sins of our ancestors, for Leviticus 26:39 & Deuteronomy 5:9 say “also because of their fathers’ sins they will waste away.” & “;for I, the Lord your God, am a jealous God, punishing the children for the sin of the fathers to the 3rd & 4th generation of those who hate me, but showing love to 1,000 generations of those who love me & keep my commandments.” & Isaiah 59:2 says "But your iniquities have separated you from your God; your sins have hidden his face from you, so that he will not hear."... We wanted nothing to prevent God from hearing us as we petitioned Him for mercy! He demonstrated His faithfulness! The truth of His word is what we clung to. In Mark 11:22-25 Jesus says "Have faith in God, I tell you the truth, if anyone says to this mountain, Go, throw yourself into the sea, & does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, & it will be yours. And when you pray, if you hold anything against anyone, forgive him, so your Father in heaven may forgive your sins." Faith is such a joy ... ornery too! .. She’s learning to sign, mostly to worship music, a good dancer too! .. She’s very determined .. You’d never know how sick she was! She still has her trach & g-tube. She has “trachea stenosis” (only 10% open betwn vocal chords & tracheotomy). To learn why her secretions pool, causing severe edema (swelling) some GI exploratory procedures are our next step, (in June we tried electric stim treatments @ Rainbow Babies & she now doesn’t aspirate when swallowing). If after any treatments the stenosis remains, a 2-part “major” reconstructive surgery (to rebuild her airway) will be required. We’re praying for another miracle! .… It’s miraculous she’s not had pneumonia from aspiration! She has no aversions as she grabs food & tries to eat! Amazingly, I produced breastmilk mechanically for 32 mos, after much formula experimenting at Children’s, she has had severe food allergies to cow, soy or goat milks! We supplemented with “oatmilk” until just recently, after Nutrition intervention, she now is on Neocate formula. She is developing physically & cognitively to the amazement of many. She wasn’t even on the Down Syndrome growth chart @ discharge 2/17/98, 6 mos old, w/ really short arms (from long restraint). Docs marvel that: she has hair all over her head (many IV’s went bad on her scalp) & she has all her teeth (malnutrition or long intubation could have prevented this) ... at Aug ‘99 visit, her cardiologist gave a “perfect heart repair report” & went on to say “Faith’s lungs are amazingly clear!” They were more concerned about how severely deformed the lungs were after her heart surgery (another thing we were unaware of) & some didn’t expect her to be active nor responsive (severe malnutrition or neurological damage because of long period on narcotics?) ... Surely God has done many miracles we’ll never know. We just keep asking for more, … to finish the good work He’s begun! At Children’s, God opened our eyes - too many kids die! We’ve been burdened to go back & pray, especially for those nobody’s praying for! We saw lots of children alone, some abandoned & parents crumbling .. unable to cope! ... Our hearts ache, for the kids & their desperate parents, searching for some hope to cling to! So, God birthed: Healing4kids & cards w/ Faith’s photo & our phone # offering prayer, are given to parents, for “encouragement” as the miracle is shared & we receive names, that a team of intercessors (now representing 12 different churches) begins praying over! If the parent wants, we go to pray directly with them. Jesus said in Mathew 25:39-40, “Go visit the sick .. I tell you the truth, whatever you do for the least of these, you do for me” & in Mark 16:17-18 “& these signs will accompany those who believe: they will place their hands on sick people, & they will get well.” & in Mathew 10:5-6-8 “As you go, preach this message: The kingdom of God is near. Heal the sick, .. Freely you have received, freely give.” & in John 14:13 “ I will do whatever you ask in my name, so that the Son may bring glory to the Father.” Unlike most parents, many friends were praying for us, yet I needed to “hear” them to survive! Those times of great hunger for encouragement & reassurance, I’d begin sinking (even contemplating running away) & God would send someone to pray! (His perfect timing) .. With faith & strength renewed, I was then able to take my eyes off of my tiny malnourished baby (rising above my own pain), so I could pray for others, some without support! I am grateful to all those friends who obediently came to pray at Faith‘s bedside, … without my even asking! Faith’s sister has never questioned how God chose to answer her 5 years of prayer, & in fact she said God must have given her a special sister because she prayed so long (5 yrs every nite!), & knew she wasn’t mad at Him for taking the other baby we were expecting the year before! She previously wanted to be a homeschool teacher, but now aspires to be a doctor & also to adopt babies abandoned in the hospital! Look at His purposes … so beautiful! .... God is teaching our whole family the true meaning of "unconditional love" & genuine "compassion". & God’s extravagant grace overwhelms us! … He faithfully provides our every need. We continue, a day at a time, trusting in His sovereignty, His perfect provision, .. His plan! Thankful that His mercies are truely new every morning! He desires & deserves our undivided devotion, our hearts & all our praise! … so Have Faith! “It’s the substance of things hoped for, the evidence of things unseen!” Hebrews 11:1 Jesus saved Faith physically .. He saved me spiritually! ... Mathew 7:25 says "& the rain descended, the floods came, & the winds blew & beat on that house; & it did not fall, for it was founded on the rock." Apart from my rock - Jesus, I would have sunk, .. thankfully, I had turned to Him in '94. We were contemplating bankruptcy, desperate for Help .. We went to a Billy Grahm crusade (I never thought I'd ever do) & suddenly realized I was lost ... Having been raised in a "church-going" family nor serving in a church, or being a nice person, was good enough ... I had believed a lie that my good works could save me, Ephesians 2:9 "For by grace you have been saved through faith, & that not of yourselves; it is the gift of God, not of works, lest anyone should boast." & also from Romans 3:23 "For all have sinned & fall short of the glory of God." .. The reality of my past & present sins flooded me! I had sinned with unforgiveness toward my husband (whom I blamed for our financial problems), with pre-marital sex, with gossip, being judgmental, prideful & envious of others … Billy said, "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord." from Romans 6:23 ... I wanted to be free of the shame of my past & I didn't want to go to censored! So I confessed my sins .. & invited Jesus in .. as Lord & Savior .. surrendering my will to His will.. Jesus says in John 14:6 "I am the way, the truth & the life, No one comes to the Father except through Me." There’s a storm ahead of each of us. Where will you turn when it hits you? Will God be able to hear you? & are you prepared to face God, if you died tonight, with every ungodly thought or sin you've ever committed? 2 Corinthians 5:10 "For we must all appear before the judgment seat of Christ, that each one may receive the things done in the body, according to what he has done, whether good or bad." .. If you're feeling a tug, that's Jesus! Don't put off crying out to Him, .. Tomorrow may never come. He says in Revelation 3:20 "Behold, I stand at the door & knock. If anyone hears My voice & opens the door, I will come in." God loves you so much, He sent His only son to die on a cross, in your place & mine, a purely sacrificial gift! I can't even comprehend that kind of love, someone loving me enough to die in my place! There's nothing we do to deserve it, nor can we earn it! We just accept it .. He's waiting .. Let Him in! Romans 10:9 says "if you confess with your mouth 'Jesus is Lord' & believe in your heart that God raised him from the dead, you will be saved." & His Holy Spirit (that small, still voice) comes to guide you as you begin your new life! Questions? email: bskubovius@aol.com
I am the father of an amazing little boy, Angel, born with Downe's Syndrome. His mother and I were expecting a healthy baby and were hit with the news of his congenital heart defect and Downe's Syndrome at his birth. We were not at risk for this... We were both 20 yrs old when he was born. We had a lot of mixed emotions on what to do. I knew right when I held him for the first time that he was my life and I would be the greatest father to Angel. Angel is 5 yrs old now and is doing very well. He had open heart surgery at 4 months old to correct his hole and valve defect. He has been pretty healthy since. His mother and I are not together anymore, but we are great parents to Angel. Angel stays with me a lot. I could not imagine my life with out him. He has taught me so much about love. I would do anything for him. Angels is progressing very well in school. He just finished pre-school and did very well. His teacher was amazed with his progress. I am very proud to say Angel is my son. He is the greatest gift God could give me.
I have read so many stories here, and they warm my heart. My 3rd child, Bryce was born with Down Syndrome. He only lived for 2 weeks. I have 2 daughters and we have all been devasted by our loss. Now my hubby and I are thinking about having another baby, and I am terrified! Down Syndrome scares me only because of the associated health problems, and I am hoping that any of you who have gone through pregnancy after having a baby with DS would email me privately with your words of wisdom. I have a dear friend whose daughter has DS, and she was born only 6 months after Bryce. Her 6 year old daughter says that her little sister has "fancy eyes". God Bless all of our's with their fancy eyes! I wish Bryce were here for me to look into his and tell him how much he is missed! Thanks. Blessings!
Here is something that I thought everyone would like to read in their "spare time" ...like anyone has spare time. Thanks for reading it and if you would like to e-mail me you can do it at jholson@coslink.net P.S. My daughter wrote these stories about her little brother. Dear Faculty Members, On September 1 of last year, a great blessing came into the lives of my family and I. We wanted to share this blessing with you. The first boy, after five girls, in my family was born! 10 days after my little brother, Joseph David Olson, came into the world, we found out that he has Down syndrome. All of us have come to find that this sort of news makes people react in many different ways. They may have said something that could have hurt us, whether they meant to or not. For anyone who may have recently had Down’s come into their lives and is struggling with something to say to the parents or family, these are some things I got off the Internet (http://www.mysp.com/p/downsyn is the website; I recommend this to anyone interested) to help you along. I myself was a little afraid of the whole deal at first, but things have become more comfortable for me. Things NOT to say These are the things that parents have said really upset or angered them: · "I'm sorry" or any form of pity. Pity is not what new parents want or need. What they need is love and acceptance of their new baby. "God gives special parents special children" or any variation. The new parents probably don't feel very special right now. Also, some parents may be a little mad at God. Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this. · "They're such loving children." This is a stereotype of children with Down Syndrome and demonstrates that you really don't know much about Down Syndrome. · "Do they know how serious it is?" or any variation. Again, this is a demonstration of a lack of knowledge about Down Syndrome. Some parents may be angry and want to reply with, "How serious is it? Well, every single cell in his body has an extra chromosome... is that serious enough?" · "You are handling this better than I could." This is an invitation for the new parents to say something like, "No, you would be wonderful." Suddenly, the conversation has switched to you instead of the parents and their new baby. Plus, you don't really know how the new parents are handling it, do you? Things TO say These are the things parents have found comforting or made them feel good: · "Congratulations." They just had a baby! What better response to show that you love them and their baby than to say congratulations. It made us feel like 'normal' parents when someone said that to us. If the hospital allows it, a bottle of champagne could be greatly appreciated. · "He/She looks just like you." The baby probably does look like someone in the family. All of the baby's genes are from the family. My son looked exactly like my daughter did when she was just born. · Friends and family who actually 'did' something like read about the disability (or find information on the web!) This really means something to the new parents. It shows love and concern for the baby. The day after we told Mikey's uncle about Mikey having Down Syndrome, he came to visit us with a handful of papers dealing with Down Syndrome he had gotten from the web. That showed us that he really cared. · Offer to babysit. It is a fear of the new parents that their family will not accept the new baby. By saying something like, "Well, when are you going to let me babysit?" you are showing the new parents that you want to part of the baby's life. This will be a great relief to them. · "He/She will do fine." The new parents are probably pretty worried. They might not know much about Down Syndrome and they may be concerned about possible medical problems. Having a positive attitude will rub off on them. They don't need pessimism or negativity from their loved ones. · "We'll all learn from him/her." This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled. · "We will always be here to help." Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives. I have also attached some information to this letter. For any of you who care to know just a little bit more about Down syndrome, this is for your benefit. Many people, I find, don’t know too much about it, despite how "common" it is. All they might know is that a person with Down’s might have a different-looking face and/or mental disabilities. I want to say here that Joseph is a "regular" baby. He has been doing everything that any 6-month-old child should be doing. Anything that he may not do, he does at his own pace. A good friend of ours, Bonnie has told us that everybody has their problems; we all get them at different stages in our lives. Some start out with them, and others gain them as time goes on. But no matter how different our problems might be, they are all problems, and God gets us through each and every one of them. Another one of our friends told us something she told her son’s class (her son has Down’s as well): I brought donut holes and told the kids that when the teachers and I were little, bakers threw away the donut holes because nobody realized how good they could be - too small, what did we need them for, not used to them, they were different, didn't look the same - then one day, someone - probably a kid - realized their great qualities. Please do not think of Joseph as a burden. He is the most precious thing in my family’s life, and I myself couldn’t ask for a more wonderful baby brother. He’s certainly a gift from God. I only share these things with you---I’m sure you must be very sick of reading, but please bear with me---because I want to spread the message that their is nothing bad about being different. He’s taught me that. He tells me that every time we put him on his stomach and he pouts because we make him actually have to put his head up to look at something. I’m really close to him. He doesn’t realize it of course, but I hope he will in time---I’m sure he will. I always wanted a baby brother, and now I have one. I thank God every day for that. I guess I should stop. This letter is already two-and-a-half pages and I’m sure you couldn’t bear much more. Thank you for hearing my story about Joseph. Yours truly, Mary Here is what she said in her Monologue..... I want you to look at this face. I mean really look. "Aww, how cute!" some of you are thinking. Or, "Yeah, its a baby; what's your point?" Well, I'd like you all to meet someone; this is Joseph David Olson. He was born on Sept. 1st 1998, and he's my little brother. He's here becasue Joseph is a very special baby. He's not one of those geniuses who began talking at the age of 2 months, or the amazing circus kid that can spit in seven different colors, but still, Joseph is a very special baby. After five girls and two miscariages, my mom decided that she still wanted another kid. Finally, she became pregnant, and four months into her pregnancy, we found out she was having a boy. It was wonderful when this little guy finally arrived. Joseph turned out to be an NICU baby; they put him on all sorts of machines because he had some trouble breathing on his own at first. But the doctors spoke of other problems, other physical problems. Joseph had so many of the traits, but it was mostly his eyes. His eyes are so almond-shaped. In my personal opinion, they are two of the most beautiful eyes in the world. (no one had any idea that Joseph had Downs....not the teachers or the students). Joseph is a very special baby. Tests were taken. Joseph did leave the N.I.C.U. soon enough, but on Sept. 11th, our worst fears were confirmed. The test results said that Joseph had an extra 21 chromosome, a condition known as Trisomy 21, or more commonly, Down syndrome. This news for me at least, was more shocking than sad. I suppose that maybe some hopes we'd all had were seemingly destroyed. But Joseph came home, and for the past seven months, has raised our hopes exceedingly. He is a very special baby. Doctors, friends and even people who have very little idea of what Down syndrome really is have put a lot of emphasis on how Joseph will be mentally challenged, will look a little different, develop at a different, slower pace, maybe not walking until he is 3, 4, or 5 years old. But the truth of the matter is, most of them can't honestly say they know exactly where my family and I are coming from. They try so hard, but they don't quite get it. And so they say things that hurt us, not meaning to, but it still hurts. See, they've never known Joseph's inner strength. The've never seen the way he holds his head up. It wiggles a little, in a funky, dancing sort of way, because it takes a lot for him to do that. But he does it; he holds his head up, nice and straight, proud of what he can do. Joseph can do everything any other child his age is suppose to do: like I said, he holds his head up; he rolls, even though he doesn't like to; he starting to attempt mouthing words like "mama and dada"; he even spits when he's on his belly, will put his head up and try to push his little butt in the air like he's going to crawl. But most of all Joseph can smile. When he smiles, you just have to smile, too, because it's so precious. And I am confident that Joseph will walk by the time he's 1 1/2. I don't care what anybody else says; I truly believe that. Joseph loves music. He loves being sung to and sometimes sings along. His favorite artist, I think, would have to be Will Smith, but his favorite songs are "Take me out to the Ball Game" and "The Pink Panther" (you know, hums a bit of it). So why am I telling you all this? I'm telling you this because it shows that my brother is a "normal" person. A friend from the hospital, Bonnie, told my Mom something once. She said that everyone has their problems. Some peopel begin life with them and some get them later on, but we've all got problems. This is true for anyone, whether you popular or a geek, rich or poor, beautiful by human standards or beautiful by divine standards. Joseph has taught me this. He just happened to start out life with problems. The good thing about that, though; is that things can only go up from here. They can only get better. Joseph is a very special baby not because of his Down syndrome, but in spite of it.
Here is something that I thought everyone would like to read in their "spare time" ...like anyone has spare time. Thanks for reading it and if you would like to e-mail me you can do it at jholson@coslink.net P.S. My daughter wrote these stories about her little brother. Dear Faculty Members, On September 1 of last year, a great blessing came into the lives of my family and I. We wanted to share this blessing with you. The first boy, after five girls, in my family was born! 10 days after my little brother, Joseph David Olson, came into the world, we found out that he has Down syndrome. All of us have come to find that this sort of news makes people react in many different ways. They may have said something that could have hurt us, whether they meant to or not. For anyone who may have recently had Down’s come into their lives and is struggling with something to say to the parents or family, these are some things I got off the Internet (http://www.mysp.com/p/downsyn is the website; I recommend this to anyone interested) to help you along. I myself was a little afraid of the whole deal at first, but things have become more comfortable for me. Things NOT to say These are the things that parents have said really upset or angered them: · "I'm sorry" or any form of pity. Pity is not what new parents want or need. What they need is love and acceptance of their new baby. "God gives special parents special children" or any variation. The new parents probably don't feel very special right now. Also, some parents may be a little mad at God. Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this. · "They're such loving children." This is a stereotype of children with Down Syndrome and demonstrates that you really don't know much about Down Syndrome. · "Do they know how serious it is?" or any variation. Again, this is a demonstration of a lack of knowledge about Down Syndrome. Some parents may be angry and want to reply with, "How serious is it? Well, every single cell in his body has an extra chromosome... is that serious enough?" · "You are handling this better than I could." This is an invitation for the new parents to say something like, "No, you would be wonderful." Suddenly, the conversation has switched to you instead of the parents and their new baby. Plus, you don't really know how the new parents are handling it, do you? Things TO say These are the things parents have found comforting or made them feel good: · "Congratulations." They just had a baby! What better response to show that you love them and their baby than to say congratulations. It made us feel like 'normal' parents when someone said that to us. If the hospital allows it, a bottle of champagne could be greatly appreciated. · "He/She looks just like you." The baby probably does look like someone in the family. All of the baby's genes are from the family. My son looked exactly like my daughter did when she was just born. · Friends and family who actually 'did' something like read about the disability (or find information on the web!) This really means something to the new parents. It shows love and concern for the baby. The day after we told Mikey's uncle about Mikey having Down Syndrome, he came to visit us with a handful of papers dealing with Down Syndrome he had gotten from the web. That showed us that he really cared. · Offer to babysit. It is a fear of the new parents that their family will not accept the new baby. By saying something like, "Well, when are you going to let me babysit?" you are showing the new parents that you want to part of the baby's life. This will be a great relief to them. · "He/She will do fine." The new parents are probably pretty worried. They might not know much about Down Syndrome and they may be concerned about possible medical problems. Having a positive attitude will rub off on them. They don't need pessimism or negativity from their loved ones. · "We'll all learn from him/her." This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled. · "We will always be here to help." Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives. I have also attached some information to this letter. For any of you who care to know just a little bit more about Down syndrome, this is for your benefit. Many people, I find, don’t know too much about it, despite how "common" it is. All they might know is that a person with Down’s might have a different-looking face and/or mental disabilities. I want to say here that Joseph is a "regular" baby. He has been doing everything that any 6-month-old child should be doing. Anything that he may not do, he does at his own pace. A good friend of ours, Bonnie Cleland, has told us that everybody has their problems; we all get them at different stages in our lives. Some start out with them, and others gain them as time goes on. But no matter how different our problems might be, they are all problems, and God gets us through each and every one of them. Another one of our friends told us something she told her son’s class (her son has Down’s as well): I brought donut holes and told the kids that when the teachers and I were little, bakers threw away the donut holes because nobody realized how good they could be - too small, what did we need them for, not used to them, they were different, didn't look the same - then one day, someone - probably a kid - realized their great qualities. Please do not think of Joseph as a burden. He is the most precious thing in my family’s life, and I myself couldn’t ask for a more wonderful baby brother. He’s certainly a gift from God. I only share these things with you---I’m sure you must be very sick of reading, but please bear with me---because I want to spread the message that their is nothing bad about being different. He’s taught me that. He tells me that every time we put him on his stomach and he pouts because we make him actually have to put his head up to look at something. I’m really close to him. He doesn’t realize it of course, but I hope he will in time---I’m sure he will. I always wanted a baby brother, and now I have one. I thank God every day for that. I guess I should stop. This letter is already two-and-a-half pages and I’m sure you couldn’t bear much more. Thank you for hearing my story about Joseph. Yours truly, Mary Olson Here is what she said in her Monologue..... I want you to look at this face. I mean really look. "Aww, how cute!" some of you are thinking. Or, "Yeah, its a baby; what's your point?" Well, I'd like you all to meet someone; this is Joseph David Olson. He was born on Sept. 1st 1998, and he's my little brother. He's here becasue Joseph is a very special baby. He's not one of those geniuses who began talking at the age of 2 months, or the amazing circus kid that can spit in seven different colors, but still, Joseph is a very special baby. After five girls and two miscariages, my mom decided that she still wanted another kid. Finally, she became pregnant, and foru months into her pregnancy, we found out she was having a boy. It was wonderful when this little guy finally arrived. Joseph turned out to be an NICU baby; they put him on all sorts of machines because he had some trouble breathing on his own at first. But the doctors spoke of other problems, other physical problems. Joseph had so many of the traits, but it was mostly his eyes. His eyes are so almond-shaped. In my personal opinion, they are two of the most beautiful eyes in the world. (no one had any idea that Joseph had Downs....not the teachers or the students). Joseph is a very special baby. Tests were taken. Joseph did leave the N.I.C.U. soon enough, but on Sept. 11th, our worst fears were confirmed. The test results said that Joseph had an extra 21 chromosome, a condition known as Trisomy 21, or more commonly, Down syndrome. This news for me at least, was more shocking than sad. I suppose that maybe some hopes we'd all had were seemingly destroyed. But Joseph came home, and for the past seven months, has raised our hopes exceedingly. He is a very special baby. Doctors, friends and even people who have very little idea of what Down syndrome really is have put a lot of emphasis on how Joseph will be mentally challenged, will look a little different, develop at a different, slower pace, maybe not walking until he is 3, 4, or 5 years old. But the truth of the matter is, most of them can't honestly say they know exactly where my family and I are coming from. They try so hard, but they don't quite get it. And so they say things that hurt us, not meaning to, but it still hurts. See, they've never known Joseph's inner strength. The've never seen the way he holds his head up. It wiggles a little, in a funky, dancing sort of way, because it takes a lot for him to do that. But he does it; he holds his head up, nice and straight, proud of what he can do. Joseph can do everything any other child his age is suppose to do: like I said, he holds his head up; he rolls, even though he doesn't like to; he starting to attempt mouthing words like "mama and dada"; he even spits when he's on his belly, will put his head up and try to push his little butt in the air like he's going to crawl. But most of all Joseph can smile. When he smiles, you just have to smile, too, because it's so precious. And I am confident that Joseph will walk by the time he's 1 1/2. I don't care what anybody else says; I truly believe that. Joseph loves music. He loves being sung to and sometimes sings along. His favorite artist, I think, would have to be Will Smith, but his favorite songs are "Take me out to the Ball Game" and "The Pink Panther" (you know, hums a bit of it). So why am I telling you all this? I'm telling you this because it shows that my brother is a "normal"
I found this site surfing the web the other evening. My son Tyler as you may have read is 8. I was thinking about all the lovely stories I read on the site and I noticed that most were submitted by "new" parents of babies with DS. Alot of the stories I could relate to. The shock, the fear, the frustration and yes ultimatly the acceptance and happiness. Tyler had a string of health problems his first few years. Fortunatly there was NO heart defects, just a slight murmer. But what was to come would nearly destroy me as a Mother. For the new parents that may see these health problems in their own DS child...Tyler at the age of 6 mos began refluxing. He had a condition known as Aspiration...he was fed liquids thru a tube down his nose and eventually a G-tube going directly into his stomach. That went on a couple years. He was hospitalised numerous times for pneumonia and RSV. After many suspicions a broncoscopy was preformed and he was then diagnosed with Congenitial Lung Disorder (a collapsed lung). Be weary of doctors continually diagnosing your DS baby with pnuemonia. He has had numerous eye surgery to correct lazy eye and has had his tear ducts probed. Tyler has had 3 feberile seizures due to fevers over 100 degrees. I taught Tyler at a VERY early age to keep his tongue in his mouth. A very lovely home worker taught me how to to do this. Its a simple process if you are interested in learning or about anything else I have explained feel free to contact me anytime!!! DS children are often mis-diagnosed and can go for a long time with a condition that could have been easily fixed. I had to use force many times with our doctors back in the states, because Tyler is MY child and who knows your child better than you? If you have medical concerns and they go further than the doctors are willing to go...use force, I did and I am now proud to say that my son is a healthy. Thanks!
I WAS NEVER BLESSED BY THE LORD TO HAVE A DS. CHILD OF MY OWN.I SPENT 8 YRS. WORKING IN A RESIDENTAL SETTING WITH THE DEVELOPMENTALLY DIABLED.IN 1995 I WENT TO A NEW PLACE TO WORK.IT WAS A DAY HABILITATION FOR THESE FOLKS.THATS WHERE I MET BOBBY.THE TEARS HAVE JUST STARTED ROLLING DOWN MY CHEEKS!I MISS BOBBY SO.BOBBY'S MOM TOOK CARE OF HIM UNTIL SHE PASSED AWAY.BOBBY WAS ABOUT 47 WHEN HIS "ma" PASSED AWAY.HE WAS IN A FOSTER HOME WITH A FAMILY.THE LADY OF THAT HOUSE PASSED AWAY AFTER SEVERAL YEARS.BOBBY WENT TO A NEW FOSTER HOME RIGHT BEFORE I MET HIM.THIS WAS SHORT LIVED,HE WAS NOT GETTING VERY GOOD CARE.THEY DECIDED A NEW HOME WAS NEEDED FOR BOBBY.BY THIS TIME I KNEW HIM AND CARED A GREAT DEAL FOR HIM.HE WAS THE SWEETEST MAN.HE COULDNT TALK WITH A VERY EXPANDED VOCABULARY,BUT HE COULD USUALLY MAKE HIS POINT.HE HAD A CUTE SENCE OF HUMOR,HE WAS SO LOVING.YOU COULDNT HELP BUT TO LOVE HIM.WELL LIKE I SAID HE NEEDED A NEW HOME,SO WITH OUT A SECOND THOUGHT I SAID I WILL TAKE HIM.SO,BOBBY MOVED IN OUR HOUSE.IT WAS PERFECT FROM DAY ONE.WE ALL LOVED BOBBY.HE MADE US LAUGH,AND LOVE.EVERYTHING WAS GOING GREAT.AFTER ABOUT 15 MONTHS BOBBY STARTED FAILING IN HIS HEALTH.BY NOW HE WAS 53 YEARS OLD.VERY LONG LIFE FOR DOWNS.I ATTRIBUTE THIS TO THE LOVE GIVEN BY HIS PARENTS ALL HIS LIFE.IT WAS A HARD NEXT 6 MONYHS.HE ENDED UP WITH A TRAC. IN HIS THROAT.HE WAS IN REHAB. FOR 5 WEEKS.HE FINALLY CAME HOME.BY THIS TIME HE WAS VERY FRAIL.I THINK HE KNEW HE WAS DYING.THE LAST FEW MONTHS OF HIS LIFE HE KEPT SAYING WHERES MA.MY HEART WAS BROKEN.THERE WAS REALLY NOTHING THEY COULD DO.HIS BODY WAS JUST LETTING GO.WELL BOBBY PASSED AWAY ONE WEEK AFTER HIS 54 BIRTHDAY.IT WAS VERY HARD FOR ME.I CRY AS I WRITE THIS.I MISS HIM AS I WOULD A BIOLOGICAL CHILD.HE WAS,AS FAR AS I'M CONCERNED,MY ONLY SON.(i have 2 daughters)HE PASSED IN "97" I STILL MISS HIM SO.WE ALWAYS SIT AND TALK ABOUT OUR BOBBY STORYS.WE ALL LOVED HIM AND THANK GOD FOR OUR BRIEF CHANCE IN LIFE TO BE TOUCHED BY A TRUE ANGEL!!HE WILL ALWAYS BE IN MY HEART.I WAS NOT THERE FOR HIS FIRST PRECIOUS BREATH OF LIFE BUT I WAS THERE FOR HIS LAST.BOBBY LEFT HOLDING MY HAND.WE LOVE AND MISS YOU BOBBY.GIVEN THE CHANCE I WOULD WELCOME ANY OF THESE ANGELS INTO MY LIFE AGAIN.
I would lke to tell all new DS parents, like myself, about my beautiful son William who is 3 months old and has Downs Syndrome. He is a beautiful baby brother for my daughter Bethan (2) and Edward who is 3 ("Nearly 4 Dad!").He was born on the 20th April 2000 and quite frankly my wife Geraldine and I thought our world had ended. The Doctor who gave us the news was a pathetic specimen of a man who could not even look us in the eye when he told us! We were devastated, all our dreams for our new baby seemed to have ended then and there. The worst of it was having to leave Geraldine at the hospital so our other kids could continue to lead their normal life, obviously oblivious to what had happened.
The day William and Gerry came home was the day we started to heal. Three months on, William is doing fine and we count our blessings that he does not have many problems at this stage. He feeds well, like any other baby, and is sleeping through the night. Most of all I would like to pay tribute to my wife Geraldine as her Motherhood skills are unbelievable and her strength throughout this is amazing.
To all new parents, the most important thing I can tell you is that I love William with all my heart and I am very proud to call him my son.
Hello! My son Tyler is 8 years old and he has Down syndrome. We recently relocated from the United States to Australia. He has richly blessed my life as a Mother. I can't imagine not ever having the chance to have someone like him in my life on a day to day basis. He is my joy. my pain, my laughter and my tears. He brings to me new and different adventures. I thought I knew what life was all about until Tyler. He is a beautiful child and full of charm. He can make me smile and cry all at the same time. Other people say to me...How do you do it? You must be special! I reply...Oh YES I am but more I am BLESSED!!! I thank God for my child with Down syndrome!
I wrote a couple of days ago and wanted to add something....and that is this...our son Joseph has not been without sickness...he has had upper respiratory infections, the RSV virus, and many ear infections. We had tubes put in last year and to be honest with you I think it has helped some but I think it isn't getting to the main problem. We have had him on all sorts of medicines and that keeps everything "at bay" as they say. A happier note though that I would like to share and that is when Joseph was born my husband told my OB/GYN doctor that we didn't name him David because of him we name him David after the plumber and after our pharmacist...not David after our OB doctor. You should of seen my doctor's face his mouth feel to the floor with laughter. Then his assistant came in to see me the following day and asked if I would have another baby boy and name him Peter after him....and I said no way. I will write more later.....
HI... i am 38 married man, have two kids , and a lovely woman. I will be in Sacramento-California at Nov.2000 to sit 4 CPA exam. Welcome to any interested mates , we can discuss any subject , questions, and sure matters of life. Just e-mail me.....soon...
HI... i am 38 married man, have two kids , and a lovely woman. I will be in Sacramento-California at Nov.2000 to sit 4 CPA exam. Welcome to any interested mates , we can discuss any subject , questions, and sure matters of life. Just e-mail me.....soon...
Hello my name is Eileen and I am married to a wonderful man and his name is Joe. We have five girls who are very healthly and very active who's rage in age of Mary...15, Olivia...13, Madilynn...10, Claire....8, Colleen...6 years of age. My story is long so please stay with me. Back on June 8th, 1995 I had my first miscarriage and the baby was only 5 weeks old. The first miscarriage there was nothing in the sack. Then on Aug. 17th, 97 I had my second miscarriage. The second miscarriage there was simply no heartbeat...which about killed me. I talked to my OB/GYN doctor and he suggest that I talk to a group that was formed at our hospital and when I talked to this one lady she helped me out a lot. Her name was/is Julie. On Aug. 14th our family was planning on adopting a little girl but that feel through and then I had my second miscarriage after the adoption feel through. So I really felt like a real winner....NOT!!! After these three losses that we had to deal with I had the hardest time dealing with it most of all. So I went to my O.B./GYN doctor and Joe & I sat and talked about what we wanted to do. I really wanted to know what caused my two miscarriages that I had had. The doctor did a bunch of tests and sent them off to Mayo Clinic and the tests came back saying that I was loosing my hormones...We so wanted to have our little baby boy and then in Dec. of 97 I became p.g. and I was very very happy about and in tears at the same time. I was put on weekly shots of hormones for 10 weeks and once a week I had my blood drawn to see if I was still actually pregnant. And I was so the injections really did work. Then I was sent over to get a ultra-sound to see the baby and everything looked wonderful....they found the baby's heartbeat and that is all I needed to see. On or near April 22, 98 I went to the doctor's office and he listened for the heartbeat and said it sounded like a little boy. And I told him he was lying right through his teeth and that he didn't know what he was talking about....it is a good thing that I get along with my O.B./GYN doctor so well...and all he said was hey listen who is the doctor anyways? I told him....you are but your not a very good doctor with a big smile on my face. And he told me to go have a ultra-sound at the hospital and so we did and you know what??? The ultra-sound said that we were going to have a little baby BOY!!! We were both in tears. I told my husband that I didn't know anything about taking care of a baby BOY and he said...you will learn fast...just change diapers real fast. I told him I don't have any boy clothes...all I have are baby girls clothes. So my next visit to the doctors was this...I told him that he was right again and that I was wrong. And he just smiled. I told my O.B./GYN doctor that if we were to ever have a baby boy we would name him Joseph David. And that is because this wonderful man has helped me through my two miscarriages that no one else seemed to care about....he was there ready to listen and steer me in the right direction. Before I went into the hospital I called Julie the nurse that helped me so much deal with my two miscarriages. I knew she worked in the NICU unit at the hospital and she said she would come and see me. I had never met this lady face to face before all I ever did was talk on the phone with her for the last two years. On Sept. 1st of 1998 a great blessing came into our family....Joseph David (Joseph after Joe my husband and David after my O.B. doctor)we had no idea that he was going to have Downs and that was hard very hard for us to get use to. I had a ped. come into my room at the hospital and just tell me plain and simple that I had a baby with D.S. and we didn't have the test results back from Mayo yet but he does have Downs. The doctor kept telling me this over and over and over again. I almost popped him one...I almost told him I wasn't deaf that I understood what he was saying. I just didn't want to believe it at all. I was like in a very thick fog at the hospital and for a month or so after that. My O.B./GYN came in to see me and he said that if there was anything he could do just for me to call him day or night. I had a c-section and he wanted me to come to the office to get the stitches out which made me feel good cuz I didn't want anyone taking them out. (In the past five c-sections I had several nurses take them out and they hurt like heck...the nurses just ripped him out and kept going didn't care at all how much it hurt)and when my Colleen was born I broke down in tears to my O.B./GYN doctor and asked him if he would take out the stitches cuz of my last two experiences that I had were just too upsetting to me. So sure enough he did with no problem and I was forever grateful. So I went in to get the stitches removed and things went real good. I even got a nice hug from this wonderful friend of mine. I remember a nurse came and talked to me cuz she has a girl with D.S. and I needed someone to talk to while I was in the hospital....she told me something that I will never ever forget and that is this....don't just look at your child as having D.S. look at your baby as a baby....when I had my girl I was consumed with the fact that she had (has) D.S. and that is all I looked at. I never got passed that at all. I never got to know my daughter cuz of the D.S. And then there was the social worker who told me once while I was in the hospital that everyone has their problems; we all get them at different stages in our lives. Some start out with them, and others gain them as time goes on. But no matter how different our problems might be, they are all problems, and God gets us throught each and every one of them. Another doctor once told us that Joseph has a "open book" to his life that he can do anything. This doctor works at the U of M Hospitals in Ann Arbor, Michigan and he told us that and then he walked out of the room and five minutes later he came back in the room and said...you know I know what your going through cuz I have a disabled child at home too....so don't worry everything will be just fine. Now this one doctor didn't need to say any of this to us but he did and I was forever grateful that he did. I remember having the ped. tell me over and over again that the one thing Down syndrome baby's don't do well in is nurse so you won't have any success with this at all. Well this ped. didn't know me and my milk supply!!! I had the milk to feed the state of Michigan and then some....and so I went to try again and again and Joseph wasn't latching on at all....until one day the NICU nurse started feeding him with a tube and sure enough I had just tried to nurse him before she fed him with the tube...and milk came up with the tube. The nurse said....Joseph is getting milk....he is nursing finally. So this was just wonderful. Joseph had a lot of trouble breathing when he was delivered the one ped. said cuz he didn't let out a big scream he just squaked and no other sound came out of his mouth. (With the other girls the whole operating room was loud cuz of my girls screaming). The nurses took Joseph right away into the NICU cuz he was turning a dusky blue color and they needed to get oxgen into him right away. He had fluid on his lungs from not being able to scream loud enough after he was born. So guess who was his nurse??? It was Julie the nurse that I had talked to for two years on the phone and never saw in person....until then. It was so good to see her have our son with her. I told her that I was very very pleased that she had Joseph. I felt that he was in the very best of hands...and he was. Joseph had to stay in the hospital longer than myself cuz of his rather "yellow" to his skin. He stayed and I decided to come home and sleep and each day I would go up to the hospital and spend hours and hours with our little Joseph. Everyone was telling me that I should stay home and take care of my other kids and just let the nurses take care of Joseph....well I got mad at them and told them to MIND THEIR OWN BUSINESS...and I went up to the hospital anyways and spent 10 to 12 hours there. This was for four days and then Joseph came home. When we got home it seemed like everyone was showing up wanting to see our little Joseph. I didn't really feel comfortable with it just cuz I still wasn't use to having Joseph have D.S. until I took him in his room one morning and said....well Joseph you are my son and just cause you have D.S. doesn't mean that much to me. I still love you so very much...you are always the son we wanted and now we have you. And from that moment on I knew that Joseph has D.S. but that is just a part of him there is just so much more there is to Joseph....he is our son, our little boy that we just adore. Everyone was having to adjust to the fact that Joseph has D.S. and I think that was real difficult for my Mom she was just always putting her foot in her mouth and saying the "wrong things" to us...but I won't go into that now its a long story. I came home and after about a month I started to call around to different agencies to see if there was some sort of help for us and sure enough there was a lot of help. I called one of the D.S. Mom's that I met up at the hospital and I think she really had a time with me...I just couldn't call anyone but I wanted to and needed to but for some reason I just couldn't. So when this one Mom said do you want me to get the ball rolling for you...and I said oh your a saint...thanks so much. So she made the first phone call and then things started to fall into place. We have Joseph into everything we can think of. Oh by the way Joseph doesn't have any real problems except that his forehead fused too soon while he was inside me...and the doctors and us thought he may have to have brain surgery down in AA (Ann Arbor) so we went down there in Nov. to see the doctors and what a hospital! I remember on one of our visits we were waiting to see the doctor and in this waiting room of maybe 125 people (these people were seeing different doctors)this little boy comes up to Joseph and starts talking to him and then his Mom comes up and starts talking to us...and come to find out she is from the same town I am from and when I found this out I was in tears. We exchanged addresses and phone numbers and have been friends ever since. God had his hand in this one. We were dealing with the fact that Joseph may have surgery and the lady told us that her son had the surgery and showed us what they did etc. She has even offered to go to AA with us while Joseph has surgery if that is what is needed. He needs to see the urogolist also. Last year he came down with seizures and we had to go through all these tests and finally after the tests were completed we started him on a treatment for a six weeks of shots every day and the side effect to this shot was crabby and we couldn't take him out of the house seeing that his inmune system was low at the time of the shots. I have met wonderful people on my so called "trip to Holland" and then I have met some real winners....NOT! I once told my father that these winners....(NOT) should go to college and take a class in kindness, caring, love, and compassion....but I think that they would flunk for sure cuz they don't have this in them at all. Here I was trying to help my son get on these different programs and I was getting flack from some people. So I reported them and they got into trouble...now I don't even talk to this agency any more....I have Joseph service provider call them and have her deal with them. I have Joseph involved in early intervention with our school system and so far it is really going well for us. Joseph is almost two now and he is not walking yet but he is scooting all around and does he move....he is starting to pull himself up too. He is also sitting up all by himself and when he is on his tummy he will go from his tummy to his knees and just sit on his knees. If anyone should have a little boy who is close to two or even one years old please write I would really love hearing from you. Thank you for reading this long long story of mine. I will write more as time goes on.
I have spent many hours this week reading the stories on this site. Most have encouraged and strengthened me, some have necessarily rekindled my fears. You see, I am pretty new to the world of DS. My baby girl, Ellie, was born only 11 weeks ago. Like many of you, the DS was totally unexpected. My pregnancy was smooth, I am only 33, there is no family history of birth defects, I have a beautiful perfect four year old son and my AFP rated my chances of having a baby with DS at 1 in 10,000. So much for all the factors being in your favor. As you all understand, to explore all of these new emotions would consume this site. I never knew a person could hurt so deeply and experience such a vast array of emotions at the same time- fear, anger, bitterness, regret, helplessness, hopelessness, sadness. When I look back to 11 weeks ago, I never dreamed I would have made the progress I have to date. I truly wanted to die that first week- to me it was the only way to make this nightmare go away. Getting out of bed was forced and brushing my teeth was a milestone in my day. Now, I want to get out of bed again, I do all those mom tasks- laundry, baths, grocery shopping, etc. But I still am missing my spirit, my love of life. Oh, how I pray it will return to me someday. I am facing returning to work next week and I dread it so. There is a co-worker in my office who reports to me. She delivered a healthy baby girl one week after me. She is 43 and this is her first child. Last summer, she miscarried a baby girl with DS. Throughout our pregnancies, the entire office worried that her baby would have DS- what irony huh?!! I am so angry that she had "my baby" and I had hers. I hate feeling this way. As for Ellie, I understand that we are "lucky". She has no cardiac involvement, no GI problems, eats well and is growing like a weed. Her PT tells us that her muscle tone is "exceptional". She is really cute- a thick head of silky black hair. It seems I am just now starting to connect with her. It was so instant with my son. I feel so cheated that it has taken me this long to begin to truly fall in love with my daughter. All I have been able to do is think about what dreams won't come true- no wedding, no grandbaby, no college graduation. I suppose to those of you who are further along, I must sound very petty- believe me, I desperately want to be where you are. I want and pray I will one day write about how this little girl has changed my life for the better and how I would never change things. I am so afraid I won't get there. I could go on and on. It helps to hear your stories and I would love to talk with anyone who understands or can offer words of wisdom. God Bless all of you for your obvious strength and commitment to your wonderful children.
Since today is my son Stevie's 10th birthday and a good day for reflection I thought I would finally add my story.I was so excited the day I found out I was pregnant. I was at work and my friend talked me into having a blood test done and it came back positive. I had been trying to get pregnant over a year. All went well til the third month when they discovered a cyst on my overy during a routine ultrasound. My docter decided we better take it out so it didn't rupture during the pregnancy. I had it removed on the first day of my second trimester. My docter came to me after the surgery with tears on his face and told me it was a tumor. I had ovarian cancer. There was nothing I could do about it then so I chose not to worry.
As the pregnancy progressed I started suffering from Intrauterine Growth Retardation. I looked it up in my maternity nursing book and the number 1 cause was from smoking, the number 2 cause was Down Syndrome. Well I smoked so I figured I was going to have a small baby, I would just quit smoking. I was too young to have a baby with Down Syndrome. Again I decided not to worry, I wasn't having any testing done cause I wouldn't do anything about it anyway.
The day of delivery my water broke but nothing else happened so the put me on pitocen. Six hours of labor with contractions every two minutes and I never got beyond two centimeters. My husband was no help. The docter came in and said oh no and I was whisked off for an emergency c-section. No time for a spinal, I was given a general. The nurses where not aloud to tell me anything that night. I worked with all of them and I didn't get to see stevie. I later found out they told my husband that stevie either had down's or dwarfism and sent him home.
The next morning the docter brought him in handed him to me and said your son has down syndrome. No warning. I cried. The only day I cried. John refused to name him after himself so I named him after the author of a painting on the wall. Never a name I intended but it turned out it suits him very well. God works in mysterious ways. He was a very tiny baby, only 4lbs 13 oz. when I took him home. That day was the beginning of the end of my marriage.
I was given no information so I found it all myself.He had a VSD repaired when he was 10 months old and frequent bouts of pnuemonia RSV and croup til the age of 5. He's been very healthy since. I left my ex when stevie was nine months old. He couldn't handle it. He just started coming around recently after realizing that family is important not just checks. I hope he keeps it up for stevie's sake.
Stevie started early intervention at 8 wks. He did regular and special needs pre-school from 3-5. He was in public school til the age of 7 when he was asked to leave. He now attends Camphill Special School with other handicapped children. He gets academics along with life skills and is thriving in this environment.
What have a learned in the last ten years? I've learned that more therapy is not necissarily better. I've learned to follow his lead. I've learned that no matter how fustrating a child he can be, the good will eventually follow. A simple hug and an I love you mom can last a long time. Most importantly I've learned that he is the best thing that ever happened to me and I wouldn't trade him for the world. Thanks for letting me remember out loud.
hi i just want people to e-mail me like pen pals those of you who do thanx alot
hi i just want people to e-mail me like pen pals those of you who do thanx alot
PART 2 ...8 YEARS AGO, WE MET THIS WONDERFUL MAN AND FELL INSTANTLY IN LOVE...WHEN HE PROPOSED TO ME HE ALSO ASKED IF HE COULD ADOPT ANDY AS HIS OWN. BOTH ANSWERS WHERE YES! WE SPENT 4 GREAT YEARS TOGETHER AND THEN DECIDED TO EXPAND OUR FAMILY...SINCE I AM UNABLE TO HAVE ANY MORE CHILDREN, THE OBVIOUS SOLUTION WAS TO ADOPT. SINCE SPECIAL NEEDS WAS ALL THAT WE HAD EVER KNOWN IN OUR LITTLE FAMILY OF 3, WE DECIDED THAT WOULD BE THE OBVIOUS CHOICE FOR US. SO WE SIGNED UP WITH AN AGENCY CALLED SPAULDING FOR CHILDREN WHICH SPECIALIZES IN SPECIAL NEEDS PLACEMENTS. ON THE EVENING OF JULY 24, 1996, WE RECEIVED A CALL FROM OUR SOCIAL WORKER THAT ANOTHER AGENCY WAS LOOKING TO PLACE A NEWBORN BOY WITH DOWN SYNDROME BORN IN GALVESTON, TX ON JULY 21, 1996. WE WERE ELATED, BUT THE AMAZING TWIST TO TO THIS STORY, IS THAT ANDY, DON AND I, ALONG WITH A FEW FRIENDS AND FAMILY MEMBERS, WERE IN GALVESTON, TX ON JULY 21, 1996 LOOKING FOR A PLACE TO EAT RIGHT BEHIND THE VERY HOSPITAL HE WAS BORN IN AT THE PRECISE TIME HE WAS BORN! GOD CERTAINLY MOVES IN MYSTERIOUS AND WONDERFUL WAYS! WE NAMED THIS CHARMING REDHEAD JONATHAN! BUT OUR STORY GETS EVEN BETTER (AT LEAST TO US!) THE AGENCY THAT WAS LOOKING FOR A HOME FOR JONATHAN WAS ONCE AGAIN LOOKING FOR A HOME FOR A BEAUTIFUL LITTLE GIRL WITH DOWN SYNDROME. WHILE WE WERE AT CHURCH ON OCTOBER 30, 1999 ATTENDING THE ANNUAL HALLOWEEN CARNIVAL, I WAS HOLDING MY 15 MONTH OLD NEICE AND COMMENTING TO A FRIEND OF MINE HOW WONDERFUL IT WOULD BE TO HAVE A BABY GIRL...AND YES YOU GUESSED IT, WE RECEIVED THE CALL THAT FROM ALTERNATIVES IN MOTION THAT THEY NEEDED A FAMILY TO PLACE A BABY GIRL WITH THAT WAS BORN ON OCTOBER 29, 1999...WE NAMED HER GABRIELA NICOLE AND THE ADOPTION WAS GRANTED ON JUNE 30, 2000. WE HAVE BEEN THRICE BLESSED AND I AM AND WILL ALWAYS BE FOREVER GRATEFUL FOR ALL THAT GOD HAS GIVEN ME...STARTING WITH ANDY, MY HUSBAND DON, JONATHAN AND NOW, GABRIELA.
I HAVE BOUNCED BACK AND FORTH IN THIS WONDERFUL SIGHT FOR WELL OVER A YEAR NOW, BUT I DON'T RECALL EVER TELLING MY STORY...SO HERE GOES (AND SORRY IF YOU HAVE HEARD IT). 15 YEARS AGO, (MARCH 29, 1985) I GAVE BIRTH TO MY FIRST CHILD, ANDREW, WHO HAS DOWN SYNDROME, TRISOMY 21. THROUGHOUT MY PREGNANCY I STRONGLY SUSPECTED THAT THERE WAS SOMETHING DIFFERENT OR NOT OF THE "NORM" ABOUT MY BEAUTIFUL BABY, BUT IT JUST DIDN'T MATTER TO ME BECAUSE I WAS SO GRATEFUL THAT I WAS FINALLY PREGNANT! I DON'T KNOW WHY I HAD THIS FEELING, I CHOOSE TO BELIEVE IT WAS GOD'S WAY OF PREPARING ME FOR THE WONDERFUL COURSE MY LIFE WAS ABOUT TO TAKE. WHEN HE WAS FINALLY BORN, I WAS ELATED...BUT EVERYONE ELSE SEEMED OVERLY CONCERNED. THE NURSES AT THE HOSPITAL KEPT A CONSTANT EYE ON ME WHEN ANDY WAS IN THE ROOM, ALTHOUGH I HAD REQUESTED ORIGINALLY FOR HIM TO REMAIN IN THE ROOM WITH ME. I WAS PLACED ON ANOTHER FLOOR FROM THE MATERNITY FLOOR AND TOLD NOT TO LEAVE WITHOUT LETTING SOMEONE KNOW. IT DIDN'T MATTER TO ME THAT MY CHILD HAD DOWN SYNDROME, BUT IT DID MATTER TO ME THAT I WAS BEING KEPT FROM MY BABY. I LEFT AS SOON AS I COULD. I EMBARKED ON A BRAND NEW LIFE WITH ANDY AND FOR 7 YEARS WE WENT IT ALONE...HIS FATHER AND I SEPARATED SHORTLY AFTER HE WAS BORN...THERE IS MORE BUT DUTY CRIES!
David is my little brother, he is 38 with Downs Syndrome. I had always been his second mother and when our mom passed away, I became his guardian. We have always connected and I have always understood his pantomine gestures and signs. He never made a sound. Never cried nor laughted aloud, his face spoke for him. Because of his silence, his disappearances were not alway noticed right away. More than once he would get on his tricycle and pedal away to be found by the police. He would flatly refuse to go with them and his strength was and is amazing. David is stubborn, and will not be made to move no matter what. It must be his idea or its no go.It was not until David was in his twenties that he was diagnosed with Obsessional Compulsive Disorder, Major Depression and Obsessional Slowness with Autistic tendencies. We knew there were other things going on with him but were told it was just part of the Downs. We also found out he is Lactose intolerant and also has wheat and other allergies. These, I feel explain some of the autistic behaviors (flapping, spinning, twirling, spacing out). There is a whole community that have strong views on the cause of autism and PDD. But, Im wandering. It is such a refuge to have all these voices out here, fighting for their children, sharing and supporting each other. I hope Dave and I arent too old for your group. I am aging, he is forever 4 years old and my funny little man.
Its great reading all these stories, I have a daughter, with ds, she is 9 years old. Has anybody gone through tongue reduction surgery, as our doctor would like us to consider it. I would be grateful for any information, especially from anyone who has gone through this operation.
My daughter, Ariana, is 5 1/2yr old. She was born on November 25, 1994 after I was in labor for 35 hours. When she was born my husband joking around called her a little blue smurf not knowing that later on we would find out she had suffered through the birth and had stopped breathing. When I first saw her I remember saying to myself that she didn't look normal but because I was so exhausted and her being my first child I put it behind my thoughts and just thanked god that she was born, and she was a healthy 8 lbs 9 oz. baby. Later that night, my family happily came with my husband to come see the new baby in our lives. When we went to look for her at the window we couldn't find her so I had my husband ask the nurses. A Doctor came out to talk to us and told us that our baby had turned blue and could not breath so they had her in NICU. When he took us to see her my heart stopped and I felt numb all over like I was dreaming. Our family were all stunned and didn't know what to do. Then he took us aside and told us that she may have Down Syndrome. I remember just sitting there in disbelief and wondering why. That day was supposed to have been the best day in our lives and it was the worst experience I had ever felt in my life. All I could do was cry and wonder what did we do to deserve such punishment. I don't remember anybody congraduate us for having a baby after they told us the news. We mourned for a very long time until I realized what a God given blessing she is. We have been through some rough times throughout these 5 1/2 years but time and again she shows us what a tough, high spirited child she truely is. Ariana is a highly functional and very independant child who has proven that the negative stuff we were told about DS isn't always true in her case. There is so much I would like to write about but would probably end up with a book. I just wanted to say, I now know we were not punished by God or that it wasn't our felt and all those sick emotions were just a beginning and we would survive and move on. God has blessed my daughter and now she is in elementary school and doing very well. Her teachers say she is a very stubborn and independent little girl. I say that it's her good qualities because I know she's just being strong and to me she's healthy. My husband jokes around and says that she's tough like him that's why he gave her an extra chromosome. I have learned so much and continually look for knowledge to improve my daughters quality of life and a little humor is good too. I would like to hear more stories so please feel free to email me. Sincerely yours.
My first Encounter with DS was when I was 18.My mother was pregnant with my 4th sibling. It was a boy, Dean Patrick who had DS. We got educated about this disorder, but, sadly, we were misinformed. The doctors were telling my mom that there was a good chance that he would have to be institutionalized. This was only 8 years ago! My parents decided to put him up for adoption. Because of my mother's own health concerns, people were suggesting abortion, but she was against it. I guess God knew that we were not ready to have such a special child yet, because several weeks later, my brother died in utero. I just turned 26 last fall, and I had my third child in January, 6 weeks early, by emergency c-section, after spending 2 weeks in the hospital myself. Her name is Petra Elexis. We knew she had Down Syndrome before she was born. My husband is wonderful. He told me when we found out, that as far as he was concerned any baby that came from me would be just perfect. We were relieved to find out, because we were being told that our baby might not make it. She had fluid in her belly, and no one knew why. They were saying that maybe her liver wasn't working. When she was born, we found out that she also has Esophageal Atresia ( her esophagus was not connected to her stomach) She spent the first 5 months of her life in a hospital 50 miles away from home. After countless tests, several devistating infections, and 8 surgeries, our little sweety came home in June. She is adorable. She looks almost exactly like her older sister, and she is bright and alert, and happy. She was worth the waiting! We are extremely blessed with a large family, and many friends who all adore her. We have a year to wait for her esophagus to be connected- several attempts failed. I can't believe how beautiful she is! I am not going to be having any more children naturally- it's too dangerous, but my husband and I have decided that later we will adopt other children with DS. we wouldn't mind having another baby like Petra. Love grows in porportion to the need. NOTE TO NEW PARENTS- Don't worry about how to love a child like this- it will happen, if you are willing to give it a try! If anyone wants to talk, e-mail me.
"In 1970 God sent to me, the most precious gift there could ever be; not in a box with a ribbon and a bow but in the flesh, all pink and aglow." These are the first lines of a poem I wrote last year for my daughter Pam's 29th birthday. Pam was born in 1970 with Downs Syndrome. She is now 30 years old and is the best thing that ever happened to our family. I have always treated her the same way I treated her younger sister and brother, with love and encouragement, and she blossomed from the beginning. In 1992 she graduated from High School with a diploma from the special education department and started work as an usher at AMC Movie Theatres. She loved that job and was especially pleased to get free passes to see her favorite movie stars in their latest films. After graduation her teacher asked her to write a speech, with her help, and present it at the Annual Teacher's meeting in the county where we live. They decided that rather than have teaching professionals address the luncheon it would be interesting to pick 3 students from the county and have them tell about their education and the effect it's had on their lives. After 2 weeks of practicing the speech in her bedroom the meeting day arrived and Pam stood at the podium, gave her speech flawlessly and received a standing ovation from 300 professionals who attended that luncheon. If you were to ask her how it went she'd be the first to tell you that her mother cried "tears of joy" because she was so overwhelmingly proud that day. As a result of that speech an article was written about Pam for our local paper with the banner headline, "Mom, Daughter, won't let Downs be a disability". She was later asked to give the same speech to the county school board at their annual meeting where she received another standing ovation. Pam has many hobbies and interests, loves to sing Kareoke, reads poetry, enjoys going out to lunch with the girls and bowling. There's never a dull moment at our house and on trips she's the cheerleader who lifts everyone's spirits when the flights are delayed or the hotel may have messed up the reservations. She just keeps on smiling nomatter what. When Pam was still in school she really enjoyed participating in special olympics for many years and has several medals to show for it. She's also a world traveler and loved our family trips overseas to England, Germany, and South Africa. Six years ago I was shopping with Pam at our local supermarket and she was helping to bag the groceries. The cashier jokingly told her she should ask the manager for a job, and before I knew it Pam had gone up to the store manager and done just that. She got the job and last year received a gold necklace with a 5 year service award from the store where she still works. Previously at the cinema she was given the employee of the month award. She enjoys saving her paychecks and is a frugal shopper, but is very generous about wanting to buy gifts for family members and friends birthdays. Throughout the years Pam's favorite time has always been her birthday. She patiently ticks the days off her calendar every year, getting more and more excited as the big day draws near. It's become a huge blowout celebration and usually turns into a weeklong affair because so many people want to help her celebrate. When asked what gift she'd like her answer is usually the same - "a cake with candles on it". At Christmas she's just as unselfish, wanting only to see the tree decorated with twinkling lights and an angel on top. Well, at our house we may have an angel atop our Christmas tree, but the real angel is Pam. So to all you parents out there who have new babies, toddlers and younger children with DS I want you to know how truly blessed you are. Our children thrive on love, so give them all you can and the happiness will just keep on growing. Pam and I sing a special song together almost every day - it's "You Light Up My Life", and she absolutely does!
My story starts March 22, and 23, 1999. I delivered boy/girl twins. Eric came out frist naturally then Tara had to be turned, then the stupid dr. let me labor another 5 hours when HE decieded that I needed a c-section, giving them different birthdays! Tara was born the next day 1:00 in the am her apgars were bad, 3 and 6, with failure to progress, and sent to a more acute care hospital to their NICU.The doctors told us gently before they took her that they suspect she had Down syndrome. My husband cried I truely was numb. I couldn't cry, I didn't know what to feel, I wasn't quiet sure what Ds meant to her and us. But we were devasted and shocked, we felt that we didn't have the cute boy/girl twin combo that we expected. The twins are our third and fourth children as we have a 6 1/2 year old boy and 4 year old girl. So Eric and I spent the first week in one hospital while Tara was in NICU at another hospital an hour away. My poor husband went to but hospitals everyday, he lost soo much weight then, he never gained it back again. My older children are doing well, and we are all adjusting ok. Eric seems to be the biggest influence for Tara and she is doing very well I believe because of her twin brother Eric! They are now turning 16 months and off the bottle eating 3 meals a day. We are very lucky that Tara is healthy with no major health problems. She pulls up to stand and is starting to cruz the coffee table. My family has been there for us, where my husbands family has not! I feel sorry for my husband they give him no support, they like to act like it's just "our problem" not their's! The birth experience was horrible and I hate to go back to think about that first year, I'm glad it's behind us. I'm very proud of my husband and me, we have done very well by ourselves and plan to have Tara participate in everything we and the children will ever do! We have high hopes and expectations for ALL our futures!
My precious daughter, Tessa, was born on 04/04/00. She is our first child. My partner and I are both 27. Like many others, we were given the news that Tessa had Dwon Syndrome about 10 minutes after her birth. I remember so clearly, feeling pleased with my Labour, and thrilled to have a little girl, then plummeting after the doctor indicated she may have DS. Thankfully she had no health problems at birth. Nursing her for the first 6 weeks consisted of expressing every 3 or four hours and bottle feeding her EBM. Now at 3 months she nurses beautifully, has very good head control and vocalizes well ahead of other "Normal" babies her age. I know we are just at the beginning of a very long and busy Journey, but look ahead with optimisum and pride in my little girl. We attend CHADS - Child Health and Developement Services -every month and meet with Tessa's Physio, Speech Pathologist and Occupational Therapist. Its hard to place in words the love we feel for our daughter, and I feel lucky or Special to have been given Tessa from a 1 in 1100 chance for my age. I would love to talk with other parents. Please Email. Love to all the other Angels like Tessa.
Hello, my story began on December 8, 1993 when I went into premature labor (32 weeks) and gave birth to a little boy whom we named Joshua. It was quite a shock when we were told our son had characteristics of down syndrome. He was Immediatley flown to a larger hospital to have a bowel obstruction repaired. He also was having breathing difficulties. Blood test confirmed he did indeed have down syndrome. Translocation Down syndrome. After a month of Hospitalization he came home on an apnea monitor and tube feedings. He is now a very healthy 6 year old who just finished Kindergarten. But our story had just begun. Do to Joshua having translocation down syndrome my husband and I went through testing ourselves since this could have been passed on from one of us. Good news came and neither of us was a carrier of the genetic trait, we were told we would have about a 1% chance of having another child with down syndrome. Two years later I became pregant again, we were very excited, but also nervous. We opted not to have any genetic testing done to our child due to our good odds and that we had another child (Brandon) older than Joshua whom was "normal". I went into premature labor again, this time at 36 weeks and gave birth to another baby boy (Jacob). Much to our disbelief he also had characteristics of Down syndrome and was also confirmed by blood test to have translocation Down syndrome. You could only imagine what my husband and I were feeling. At 8 months old Jacob had to have Open heart surgery to repair a vsd defect and had a pacemaker placed. He is now 4 years old and very low functioning. These past years have been a struggle for our family and my husband and I. We don't have much family support. We did not plan to have anymore children at this time, but much to our surprise I became pregnant again. After consulting a Genetises I had genetic testing done (CVS) and found out we were going to have a baby girl with normal chromosomes. On Jan 21, 1999 I gave birth to a healthy baby girl who is now 18 months old. We have a very unique family. I would love to visit with another family that has two children with down syndrome I havent come across anyone yet to visit with. My e-mail address is Jazz@comlinkusa.net. Thanks for reading my story.
Hi! I'm Linda & my husband Ralph & I have been married 21 years as of this October & we have 3 beautiful children -Aimee, age 11, Kate, 7 (soon to be 8!), and Adam - who is now 5&1/2. Adam (who is Down Syndrome) was born to us on November 10, 1994. I had no idea that he was Down Syndrome. Although I was 37 when I conceived him, we had decided that whatever God gives us, is best & He would help us to do the rest! So no aminio for me! (The Dr. had told us that there are risks in the actual collecting of the aminio fluid, so if we weren't considering terminating the pregnanacy, that there'd be little reason to put the baby at risk.) I did have an ultra-sound, and the blood work up for spinal defects (AFP). All looked normal - no cause for alarm.My preganacy with Adam really went quite normally. I gained about the same amount of weight that I had with the other 2, felt tired, just like with the other 2, and had some carpel tunnel syndrome in my hands (a little more than before, but that had happened before with the other 2 also). In looking back now, probably the only difference I can say I remember is that Adam did not move around as much as my other 2. I just figured that this was going to be a nice "quiet" baby! :) Aimee was definitely my most active,(she never slept through the night till she was almost 3 years old!!!! - But that's another story!) So, when I went in for my scheduled C-section on November 10th, my whole family was guessing I was about to give birth to our 3rd daughter (everyone thought it was a girl!) I was "scheduled" since I didn't dialate in my previous 2 delieries & both of those were C-sections, the Dr. didn't want me to deliver naturally, for fear that I might "tear" from my previous C-s. He was "on call" for the 10th, so that's why we went in then. Well, at 9:16 am I gave birth to Adam - I was awake, but had had a "spinal". Ralph was there with me in the operating room. It was a great elation for both of us as the Dr. announced "You have a brand new, healthy baby Boy!" We were so proud - of course, we had both just prayed for a healthy baby - not really caring if it was a boy or girl. I thought "Wow, my Dad finally has a Grandson! He'll be so proud when he hears the news!" Well, they were cleaning up Adam after he was initally given to Ralph to hold for a few minutes. Adam weighed in at 8 lbs, 7 oz. They were doing all the "routine" checks on him when I noticed that the Drs/nurses who were checking Adam (there was a group of about 5 standing over him) all bent forward with a "Gasp!" remained there for what seemed like eternity, but was probably only about 3 seconds - and then they all stood back up, with a hugh "Sighhhhh". I could only think - oh my gosh! Something's wrong with the baby! Did his heart stop beating or something???! As it turns out, I believe they had discovered the "tell-tale" signs of DS - The "simeon-crease" line on the palms of his hands, the wider separation between the big toe & the other toes, the "low tone".
It was in the recovery room that the Dr. came in and told me the "news". He was very somber & I knew something was very wrong. "I am afraid I have to tell you that your son may be Down Syndrome.....Of course, they'll do a blood test to make sure." To say I was shocked, is an under-statement!I really shouldn't have been - It is funny, but with each of my pregnancies, and even before I became pregnant, I asked my Dr. "So, what's my risk of having a child with Down Syndrome?" Now, maybe it was because it was the only genetic defect that I knew the name of, and that it was directly linked with the woman's age at the time of conception. But I actually think it was God, preparing me for what was to be.
My next thought was very vivid fear - "Where will this child be when he is 35 and I am too old to take care of him??!" Needless to say it was a long wait that day, before I got to hold my son. They ran tests and checked him all over until about 7:30 pm. They had poked Adam's little body about 20 times, trying to get enough for a blood sample to be sent out to a genetics lab. (he has "roly" veins!) In the meantime, they ran EKGs and did X-rays to check his internal organs. God HAD answered our prayers - Adam was a healthy baby!! :)
When they brought him to me, he seemed a bit limp and floppy, and he was so very tired from all the "testing" and poking. The nurses told me that I shouldn't expect that he'd nurse very well, as DS babies with their longer tongues and low tone don't make for good "nursers". Well, I should've relied on my motherhood instincts - and known everything with Adam would be just fine - because Adam proved them wrong! (I figured - I am going to nurse this baby - my other 2 did it & so can he!) He nursed so well, that he didn't want to give it up! Finally, he did, by age 3. (Yes - 3rd birthday - and I NEVER thought I'd be a Mom to nurse their little one for that long - but his oldest sister did the same thing - guess I had enough friends in the LaLeche League that say that even 5 years old is OK!)
My doctor had to go back to the office, so the Hospital doctor took over the "job" of showing us how our child "must certainly be" Down Syndrome. Now, Ralph & I were both in denial at the time, but she insisted that "he looked different" and tried to show us the various DS traits - to which of each we could find a relative (or one of us) that had that characteristic. She was so forth-right and rude - not very sympathetic at all and certainly didn't bother to tell us any of the good attributes that a Down Syndrome child can have!
During the secoond night of my hospital stay, I was lying in bed awake about 12:30am. I had just finished nursing Adam and was trying to find the peace of mind to get to sleep, so I scanned the few TV channels that they had in the hospital. There was "The Clock" (a big old clock on the screen that gave the actual time -- that was a "hospital special!"), a talk show, a few comercial laden shows and a show that I thought at first was one of those shows which shows children who are in 3rd world countries and need "your support - so phone in your monthly pledge today to feed and clothe them". Well, as I flipped through the channels a second time, the show came up again, this time, I stopped and looked at what appeared to be a Down Syndrome child on the screen. Then I heard the narrator say "and this boy, Joey, who is Down Syndrome..." - CLICK! I switched the channel so fast & prayed "Dear God - please - don't let this be my son - don't let him be Down Syndrome!" I refused to watch the show and I finally dozed off to sleep. The next night, I again found myself to be restless and I couldn't sleep. With Adam dozing in my arms, so content and beautiful, I again searched the Television stations. I could hardly believe my eyes when I flipped through the stations - I came to the EXACT same show at the EXACT same spot as the night before!!! TRUE FACT! This time, I KNEW I needed to watch this show. I knew this was NOT a coincidence - but as a friend of mine likes to call it - it was a God-incidence. I KNEW God wanted me to see that program! So, with tears in my eyes, I watched as the (true) story unfolded about a little boy (I believe his name was Joey) who had gone through Dolphin Therapy in Florida when he was about 5 years old. His parents had done this with him to help him learn his numbers and other things. If he did his "work" correctly he could go for a ride on the dolphin's back. There was a dolphin there that he became very attached to, and the dolphin was apparently also fond of the little boy. (The show claimed that dolphins could "sense" a child that had special needs - in particular Down Syndrome children.) After a year or two, the little boy moved away, and could no longer visit his dolphin friend "Bea". Soon afterward, the parents learned that "Bea" had become very ill. One night, the little boy woke up calling "Bea -- My Bea". Later, the parents learned that the dolphin had died that night, at the time that the boy had called out for his special friend....... I was so awe-struck by this story - I just cried and cried (still do, remembering the memory of how it felt - being a new Mom to a Down Syndrome child...)
The people in the hospital were unfortunately not very educated about Down Syndrome. My Ob/Gyn said that in all the years of practice (about 25) he had only delivered about a half dozen DS babies. (Ironically, only 10 months later he delivered yet another Down Syndrome child. --- What was really wild is that this was a woman I worked with!- She was also "caught by surprise", as she didn't have the aminio done either - because she was only 30 at the time she had her baby girl.)
I had dozens of questions that no one could seem to answer. Somehow, in my heart, though not given much encouragement, I felt God's presence and I felt a peace about the whole situation. I still had moments of wondering where to go for help, concerns of how to nuture this child. I was slowly (and am still) being given answers. - We thought - what do we know about DS? We tried researching the local library - they unfortuately had old, out-dated books on Down Syndrome children. Scary stories that told of the average age being only about 9, and that they were "institutionalized", many had health problems and were thought to be "unteachable". Very slowly we worked our way through our "grief" talking to friends and trying to find hope for our son. Little by little, people around us seemed to have information, resources popped up where we least expected, but needed it most. We discovered friends who had DS relatives - older, yet still in much better shape than the "stories" told in the books we had read! (My husband's adage of "Don't believe everything you read" rings true!) We found a local support group through our church. -- There was another young couple, members of our parish that we had never met till then, who had had a DS child the previous year. They had joined the support group and advocated for us to do the same. -- I couldn't believe the number of people that within 6 months we came to know or found out that they had had experience with Down Syndrome. I saw several TV shows by chance - one included the story about Dale Evans & Roy Rogers and about their family and their child with DS. A dear friend gave me a book "Angel Unaware" by written by Dale Evans about her DS daughter. Another friend gave us the book "Count Us In-Growing Up With Down Syndrome" by Jason Kingsley & Mitchell Levitz. Even my Mom told me that her Mom used to baby-sit for a little girl with DS way back in the 30s. It seemed like everywhere we went we met people who had been touched by these "angels".
From there the story only grows more positive. Adam is the light of our days and we thank God for blessing us with his presence. There are trials, sure, but the smiles that go along with those, are too great to be without. I've always said - anyone can give birth to a child with 46 chromosomes, but I feel really special that God picked me to give birth to a specially-talented child with 47 chromosomes!
So that's "Our Story" in a (very large!) nutshell....Didn't mean to bore you all, but it felt good to relive those first few days in my little son's life. He IS a gift from God!
I found out I was pregnant in November, 1999. In March, 2000 I had a routine ultrasound. The ultrasound showed severe hydrops. We were sent to a specialist in Grand Rapids who repeated the ultasound and were told that our daughter, had a heart defect and severe hydrops and we were given 0 percent chance of her survival. We were offered alternatives--abortion or wait it out for her to die. We chose to to wait and to pray. By May, 2000 she was still thriving inside me so my doctor sent us to the University of Michigan. They repeated the ultrasound and we were told that the hydrops had resolved. It was a miracle. No other explanation. They told us that there was a good possibility that our daughter had a chromosome abnormality and suggested an amnio. We got our amnio results on May 12, 2000 and were told that she is down syndrome. We were thrilled. Not thrilled that she has downs, but thrilled we are blessed to be having her. We had already greived for her and prepared for her death. Now we were celebrating her life. Tomorrow I will have a c-section and she will be with us. She has a large VSD, but the doctors do not see any immediate concern. I just want to thank everyone for all their letters which I have read daily for the last few weeks. You are all responsible for keeping my spirits up and giving us the support we needed. I will write again after I get to know my precious daughter, Mary.
Hello I am Jackie mom to Emily who is 20. Our STORY is so far back that I will just give you the address of the lovely website that Spencer's Mom Mary from the UK made for her. http://www.btinternet.com/~m.tutty/emily.htm
Hi I thought Iwould tell my story of when my wonderful young man Stephen was born. Stephen was the fourth child,and I expected everything to be normal as the other three births I had. But, when Stephen was born he was very blue and the doctor I had did not tell us that Stephen was Down Syndrome nor did he tell us that Stephen had a heart condition along with all the other problems we would find in the next year. Stephen was two months old when we finally took him to another doctor and that doctor told us that our sweet baby had ds I was only 22 at the time and he didn't have exact down syndrome look so we were very shocked to find out. Stephen's heart doctor was the one that finally told us Along with Stephen having a heart defect which was suppose to be repaired time he was two Stephen also had a seizure disorder which would be the big problem. Stephen went into seizure status when he was one and they put him on a drip to control the seizures but, when he was in the hospital he started having respirtory problems and his lungs started collasping he was then put in I.C.U. where he would be for the next month While he was there they had to do several cut downs for his IVs so they could get a vein to work We went through a valium drip and several other medications to control the seizures he was also on a ventalatior so the machine could breath for him because he was not getting enough air. We went through this for along time, I believe that it was miracle that Stephen made it through this one hospital stay,We stayed in the hospital for three months for that stay. We also stayed several more times for a fundleplaction surgery to put in a g-tube and then we stayed a month for our heart surgery.There was alot of people that didn't think Stephen would make it But I believe God had more in mind for Stephen. He is now seventeen years old and we still don't talk but, after five sets of ear tubes a heart surgery and pnumonia, and our big 3 month stay we don't even have to go to doctor for anything other then a check-up. It is wonderful to see how God truly works.
I had a boy, Sean, 5 weeks ago on 6/1/00. After they cleaned him and handed him to me, I knew instantly something was wrong, We thought maybe he was blind since his dads parents are both blind. They called in his doctor then I knew something had to wrong. I do not think I have had that hard of a blow to the heart in my life, I screamed and cried for hours then Sean was being fed in the nursery when he turned blue, They put him in ICU for 9 days due to pulmanory dsyfunction, Thank God no heart defects. Our attitudes towards his DS diagnosis went out the door as soon as he fell ill. We do not care that he has Ds, We feel blessed that he will teach us wonderful lessons in our future on how to treat others. I thank and pray several times a day to God for giving me this special child. I remember the main thing that the doctor told, He said-You will not raise this child alone-we will help you arrange a team to help with his learning. He will see PT already next week and we try to excerise him several times a day. He has rolled over since 1 week and can hold his head well though the rest of him feels like a ragdoll- He can now eat without turning blue-Thank you God- He has a blocked tear duct and nystagmus but according to the eye doc - he should be able to see- he failed 4 hearing tests but passed 2-other than that is health is good so far. We look forward to helping him develop and I quit crying over the situation. He doesnt need to see me feel sorry for myself, anyway we consider him to be "normal" If you look around at people even yourself- who is really "normal". I also think society is changing the quidelines on DS people-they have to since there are 250,000 DS people in the US alone. I love to read other people's stories- they give me such hope and inspiration.
Our son was born June 19, 1999. I don't know why I was chosen to be his mommy, but I'm so thankful! He is the absolute LIGHT in my life! He had open heart surgery when he was three months old. He is doing great now! Our county has great services for him -- Early Intervention, PT, OT, Speech! I would love to hear from other parents!
I have a 10 month old daughter, Abigail, who has Down Syndrome. I was aware that she had DS before she was born. She was born 8 weeks premature and weighed 3lbs 5oz at birth. She stayed in NICU for 24 days. She has a heart defect(AV Canal, hypothyroidism, subglottic stenosis(scar tissue in her airway) and is fed through a stomach tube. She has been in the hospital over 12 times since she was born. She also has had one heart surgery (when she was 2 months old) in which a band was placed around her pulmonary artery to serve as a temporary fix until her major open heart surgery. She had this surgery because she was in heart failure and was too tiny to have the main heart surgery. During her many hospitalizations, she has had 5 surgeries on her airway, 2 stomach surgeries and the 1 heart surgery I mentioned earlier. She was due to have her "big" heart surgery to repair the two holes in her heart but she now has a heart infection and a blood infection which we have been treating with antibiotics since May 1, 2000. She also has a central line (IV in her artery) to administer her antibiotics and to give her extra fluids because the band on her pulmonary artery is now too tight and she turn blue. Through her many hospitalizations and surgeries she is the sweetest angel and truly a "mircale baby" We keep her at home when she is not in the hospital because we don't want to subject her to any more infections because her resistance is low. I told my husband I can't wait until after her surgery because the first thing I'm going to do is stroll her down the street! Her stroller has never been used! Our lives have been turned upside down due to the constant doctor's appointments and hospitalizations. I also have epilepsy and have seizures quite often so I have been unable to drive since Abigail has been born. I also was unable to return to work since Abigail was born because she has been so sick. My husband works alot of overtime to compensate for my staying at home. We do not qualify for any financial aid for Abigail due to my husband's salary. Fortunately, my mother has been able to help us out tremendously. Hopefully, I will be able to drive again before the year is out! Lookout then because I will take Abigail everywhere. During all of this, she receives OT and has a special instruction teacher and a home health nurse. We also have a television monitor (called Telehealth) connected with the doctor's office so that he can listen to her heart and "check her out". We have nurses come to our home twice a week, go to the doctor once a week and have this "Telehealth" visits twice a week. As you can see we stay very busy. Dispite all we have been through, I thank God every day for choosing us to give such a special blessing! We are so lucky, because we have an angel with us everyday and we love her with all our heart!
Hi, my name is Pam I have a son that has Down Syndrome. He is now 2 1/2 and the joy of our lives. He attends therepy two times a week (o.T , P.T and Speech) and he seems to be doing very well. He just now started walking in June. We also just started him on NuTriVene-D two weeks ago.I would like to hear from other people who's children are taking this product. My son Kyle also has an eating issue, I would like to know if anyone had this problem ans what they did. E- Mail me
My experiance with DS started 15 years ago. I'm a nurse who specializes in this area. I've worked with many different types of special needs kids. Up until 9 months ago i was able to leave my job, go home and not give it a thought until the next day, until Sept 21,1999 @ 1:47pm .Thats when Liam my #5 child was born.He was born with DS,5 congenital heart defects and pulmonary hypertension. Boy was I going to use all my nursing skills,I learned fast that when its your child whose ill,nobody seems to be able to do enough for you.I also went brain dead, so Needless to say i wasnt much help. Anyway long story short. Liam is doing beautifully. He had surgery Feb,14 (good day to fix a broken heart)which was totally succesful.He is the light of all our lives, always smiling,laughing and ready to play. There is'nt a day that goes by that i dont thank god for this blessing.He seems to be about 2-3 months delayed,he says ma, da and baba.Anyway just goes to show you that God has a plan for all these special babies,It seems that we all have the same sentiment,their the best gift that anyone could ever possibly imagine.Liam has shown me that my love for him is boundless. Don't get me wrong i love my other children,but their all older so they understand, they all feel the same way. My husband is also insanely in love with Liam. Anyway thats my story,I would love to hear from anyone who wants to write. Have a good week. Marie&Liam
MY son Jeremy was born Oct. 9, 1979. He had a pretty rough start in life with open heart surgury, pnemonia, heart failure, tracheostomy, and thyroid. To look at him now you would never believe it, he's heathy as can eventhough he must be on his thyroid meds probably the rest of his life. He graduated high school in 1997 and now attends a work transitional program at a vocational school, which he will graduate from in 2001. He has had a paying job for 1 yeasr and loves bringing home a paycheck every week. We are so proud of all his accomplishments, and love him very much. Jeremy is our second son and not until he was born did we realize how much we take for granted. I,m so thankful GOD gave us this wonderful human being who is and always will be a great gift from heaven.
About a year and three months ago my youth pastor and wife were expecting their first child. We had spent many months praying for the child and it's health. Soon after we found out Charlie was born, news followed that he had downs syndrome. He was very sick. Everyone at church was in shock and couldn't beleive it. Charlie soon got well and for th epast year has been such a wonderful blessing. God has changed the way i look at others. God doesn't love Charlie any less because hew has downs or anyone else because of their circumstances. Charlie had open heart sugery aboout a month ago and recovered wonderfully. He is a true blessing.
The baby was due on Christmas eve but arrived a week later.My Mother had mentione that despite having four children of her own,she'd never seen a live birth,so we arranged for her to be present aswell as my partner.Things quickly went from anxiety to panic when they couldn't find the foetal heartbeat,and it ended up as an emergency section.The worst of it was that Mum and my partner were told it was a girl first and were jubilant.(we have two sons)Half an hour later they were informed that she had Down Syndrome.I was still unconcious!When I came round i was also told that I had a beautiful baby girl(which of course I did.)which made the transition from euphoria to utter despair all the harder.We like everyone else who receives this news were so devastated.All I could think was that I would never be able to plan my daughters wedding!It seems incredible now that I focussed on that one trivial thing.However,Georgia is now 3yrs old (born New Years Eve.No celebration for us that year!)and the apple of our eye.Luckily she has no health problems and she really is my beautiful baby girl!!!!
Our story started on 1/1/97 the day that our daughter Alexa was born. She is our 3rd child. We also have 2 sons. All our children are 18 months apart. My daughter came 1 month early, on New Year's Day, A baby girl!!! How wonderful we felt. No one could have been happy, our perfect family now complete with the birth of our daughter. 12 hours later I thought it was the end of the world. The doctor came into the room and told me that he thought my daughter had genetic problems. I didn't understand him. He was not making sense. I said, are you telling me that my daughter is retarded? (Yes, that was my question. I was so niave.) He said, we are doing tests and we will let you know. Is there anything we can get for you? Can you believe what an idiot this guy was. I asked for a phone to call my husband. (Yes, they told me this news without waiting for my husband to come.) They confirmed that she had DS, 4 holes in her heart, a defective vavle and couldn't feed. We were beyond devestated. I cried for days. My daughter stayed in the NICU for 25 days. For the first 2 weeks all I could do was cry. I could not handle this, I thought, It was going to be too hard. I had 2 babies at home to take care of, how was i going to handle this baby. I just wanted it all to go away, for her to go away. I thought, where is the daughter who was going to graduate from college, get married, have children... all the wonderful things I had thought I would have with my daughter. I just could not get over my grief. My husband, Thank God, pulled me through and showed me that we could do this. My daughter has gone thru 2 heart surgeries, one stomach surgery, 9 pnuemonias, numerious respiratory infections and terrible asthma, all with a smile on her face. She is the sweetest, most lovable child I could ever have hoped for. (Imagine that I was hoping her away!!!) It was been a very difficult struggle for our family with her health problems and not many family members around for suppport. But we did it, doing it, and continue to be ever grateful for this wonderful person who has blessed our lives. She has brought such knowledge to us, from life, love, caring, compassion, empathy, understanding.... She is God's greatest gift to me and my family.
my uncle charlie is 46 years old he came to me when my grandmother passed away he lived in florida with his father and his sister and younger brother 5 years older than i he had 2 teenagers and was unable to take care of all of them. physically my grandgatyer was unable anyway he ended up with me in mass fine at first and then had previously had a cva stroke and a little unsteady and required physical therapy and occupational threapy he tlaked walked and was funy legally blind not hte healthiest he ended up on a ventilator and now 3n yeaars later i wouildnt gibe him up to a sole i love and care for him i am a n=urse he is my blood and although he cant talk gets his point acrooss he has a trach and g-tube never the less he is sooooooooo loved he is severly retarted not your high functioning Downs but my goodness he is special thought i"d share thanks!!!!!!!!!!!
Hello. So many people have recommended Uno Mas to me that when i found the address on another site I thought I would come. Here is my story in brief though I could write Pages and Pages ( and have done so on my website). Karen was born onMay 13th,1979. She was my second daughter. her sister was 3. When she was five days old and suffering from jaundice and dehydration we were told she has Downs Syndrome. It was a great shock and I could not bear to tell my parents so my husband had to do it and to tell his parents too. After the jaundice Karen began to do well, she was breast fed and a lvoely baby. At 6 months she developed infantile spasms and was having an injection of steroids every day for severl months and then alternate days,and finally no more was needed. She learned to smile, to bear-walk, to walk,to talk , to feed herself, to toilet herself, to read, to write , to count...... She is now 21 and inher final term at a specialist college.She has received several certificates and is good at photography and swimming, she has learned to use a sewing machine, to make candles, to look after animals and is learning to look after herself-bedmaking, using a washing machine, all the things she'll need to know when she leaves home. The things she enjoys most at college are the discos and juke box, table tennis and hanging out with her friends. She has turned our world upside down but for the better. WE used to judge people by their intelligence now we judge them by their humanity. Her sister was more mature and more compassionate than other children her age and has grown upo to be a wonderful person as has Karen
To Punchbuggiebabie: I applaud you! My daughter, like so many others, is an angel. I could write a book about our lives and how she has touched my life and everyone we know, but that is a story for another day. I would encourage you to look up the National Down Syndrome Society on the internet for some more factual information also. Although, there is no comparison to the true life stories you will find on this link. My daughter is so wonderful words cannot begin to explain how I feel about her. Good luck to you, the world needs more "punchbuggiebabies". God bless you for caring!
God decsided to send a special angel to me, when i needed it the most. I had a very good life up until the age of 7. Then my life took an unexpected twist. My mother and father were killed in a car wreck, just 10 miles from our home. I didnt have grandparents, or any other family that could take me in. I was moved around from foster care to foster care, until the age of 17. My life seemed to quit that day. On May 18, and i remember that day the best. A family wanted to foster me. After being in many homes, i was told and explained to that this one would be different, and that i should make the most of it ( i would be 18 in 4 months) and on my own. I was scared. I had seen so many different families and been around the good and the very bad. I couldnt help but wonder intensily about this one. When Mr. and Mrs. Jacobson came by to pick me up, they appeared to be normal people. I could never understand why they descided to help me, but my heart went to them immediately. I had talked to Mrs. Jacobson on the phone a couple weeks prier but was not prepared for what i saw. I wasnt told that they had a child, and her name was Leslie. She had down syndrome and was 10 years old. How could they want to help me, i wondered, when this little girl needed more attention then i ever could. I thought about this all the time. Sharing a house with leslie was hard at first, but i couldnt help but fit right in. When i'd come home from school, leslie was always waiting for me. I remember telling her about my day and how excited she'd get talking to me about just girl stuff. It didnt matter that she was different, because so was i, in my own way. When i was upset or having a hard night, she'd come into my room and sit with me. She was my best and only friend. I couldnt tell you how much leslie as touched my heart. She lived to the age of 20, and then pasted away. I have many pictures of me and her. I was an unloved child who found unconditional love, throught the eyes of innocence.
Our daughter Brona was born to us in aug 94.We had a hard time at first.Things got a little better .Then our problems began again.Brona has started mainstream education.I wiuld like to warn parents that it is a rough road.Because of the apparent ignorance of our educators about Down Syndrome we unfortunately suffer not to mention our daughter. We have to say that personally we love our daughter dearly.To be honest it is a censored of a struggle.But like all hard working honest parents we will have to get on with it.Life goes on.
My son, Adam, was born with Down Syndrome. He had a rough first three months. He was born with Tetrology of Fallot and had open-heart surgery at three months. He's had trouble with ear infections (12 so far) and blocked tear ducts. But other than that he is the happiest, most good natured baby in the world! Adam will be one year old next week, on the 21st of June. He is delayed right now about six months. He still cannot sit unsupported or crawl, but he does drag himself anywhere he wants to go. He's actually pretty hard to keep up with. He's very active. He has become the light of my life. He is precious, with his precious smile, and his precious laugh. Everybody who knows him loves him so much. I am so very lucky to have been given this precious gift, Adam.
My daughter, Gilly, is 18 months old and walking. Now, as my husband says, time to start obsessing about talking. We are teaching her sign language too. Any tips on this would be great. I have a daycare too and I think that has been really good for Gilly. Both my husband and I sort of knew before she was born that she had Down Syndrome but because we didn't go for the genetic testing the reality hit after she was born. Luckily she has been very healthy and so far we have had great support. Well like I said I would love to hear from people.
Three years ago when I learned by daughter had Down Syndrome I was devasted. Not that I had not been exposed to this before, because I worked at a placed called Handicapped Development Center. Now, she is the most precious child in our lives. Everyone around her loves her dearly. She is doing very well. She is on the average of 6-9 months behind. She is on Nutrivene which seems to be making some difference, but most of all she is treated like a normal little 3 year old. Because I have a daycare she is exposed to children everyday and tries very hard to keep up with them. She will be starting a special ed preschool in the fall and will be integrated into regular kindergarten. She is the joy of our life.
Just had to tell you my experiences. how many years ago I met a young man with Down syndrome who was being picked on by a group of youths, I intervened, and a year later, 150 miles away a young man came up and kissed me and thanked me, It was he. I was profoundly touched. Later on in life I was sent to photograph a whole school of Down Syndrome children ( Ignorantly I was dreading it). Boy did I get rewarded, it turned out to be the most beautiful experience of my photography career, when each child delighted in the experience and applauded their class mates. I indeed was privilged to serve them.
Hi Everyone, I was 20 years old when I had Sarah. She was born August 4, 1999. I did not know she had Down Synsrome until 8 hours after she was born. She has an ASD & PDA of the heart. Sarah developed hypothyroidism when she was 6 months old. Sarah is the light of our lives. My mother is just head over heals in love with her. My husband calls her his little munchkin! It is very hard to get Sarah the proper services. But we keep fighting! Sarah has gotten 1 hour of OT, 1 hour of Speech and 2 hours of PT a week since she was 3 months old. She is doing beautifully. At 9 months old she learned to roll over and has not stopped since. LOL! She can also sit on her own when put in the sitting position! I'll stop bragging now. Anyone and Everyone, feel free to drop me a note anytime!
hi everyone my cousin david has ds and he is twenty eight which is really old for ds victims he is as normal as ever but just has trouble breathing and has medicine every day he goes to the hospital a lot and his lungs collapse well its been good talking godbless
Hi Everyone! We have a precious little angel, Arianna who is 14 1/2 months old now. She was born on March 13, 1999. We found out that she had ds after she was born. We have two other children Tony (14 years old) & Matthew (6 years old). When I was pregnant with Arianna the doctor asked me if I wanted to have an amnio since I was 40, but I declined. Right after she was born, the doctor came over to me and my husband & said that she has some characteristics. And I said, "You mean Down Syndrome" and she said, "Yes". She told us that after the pediatrician sees her that the genetic doctor will take a look at her on Monday. She was born on a Saturday. So when the genetic doctor saw her on Monday, she said that they would do the genetic test on her, but she was pretty certain that she did have ds. We had to wait a week for the results, which is very long wait. In the meantime, Arianna could not suck, she only weighed 4 lbs 11 ozs. and was 18 inches long. We tried to get her to nurse or to take a bottle but nothing worked so the had to tube feed her. She could not afford to loose any weight since she was so tiny already. The doctor said that they could remove the tube once she drank an ounce. All we could get her to drink was a half an ounce and it would take her an hour to do it. Finally after a week she was able to drink the ounce and they let me take her home when she was one week old. The hospital was great they gave me a room and let me stay and take care of her the entire time. It made it easier for me, since I was pumping my breast milk to feed her. I forgot to mention that when she was born they also told me that she had a VSD, so we so the cardiologist. She had her surgery when she was 6 months old and has done exceptionally well. She does not have to go back for another year. The only thing that he noticed is that she still has a PDA. They may have to repair that next year. She has been in an early intervention program since she was 6 weeks old. The school that she goes to is called Good Shepherd. She has OT, PT and Speech. Although she does not like the speech therapist at all. She cries everytime, she does not like her messing with her mouth. I think I said enough for now sorry it's so long. There's one more thing that I would like to add. My husband and kids are so wonderful with our little Arianna. Everyday my husband tells Arianna "Thank you for coming to live with us". She's the perfect little baby. It seems that everywhere we go there is something about her that makes everyone love her. She is truly God's Special Gift.
Hi my daughter april is the love of my life,she is everything iwanted in a daughter with the added extra of DS.We had lost our first pregnancey so when three months later i was pregnant again we were just like the cow OVER THE MOON,but also very cautious.I took things easy hoping i would nt loose this baby but never once being a young woman of 27,did DS enter our minds.I had a good delivery,if there is such a thing, but new straight away that something wasent right.I thought april just had a squint, dont ask me why,then that beautifull moment shared only by Mother Father and new life was shattered with the Drs words "we are 99% sure your baby has DS." I sort of went in to "what have i done know?" mode.I instinctively blamed myself, i had lost our first child now id given birth to a DS baby.Of course those thoughts and feelings didnt last long for that very same night i fell in love with my daughter.Ihad my son one year and ten days later.Jack has had made the biggest impact in our daughters life.From birth he took total control and has taken on the roll of first child we have always been open and honest with them and thay understand our biggest hurdle of heart surgery is yet to come,and we know that when it comes we face it together.Forgive me if this letter sounded a bit gushey but i find talking about my kids like eating chocolate.Ijust cant stop.Having a special needs child made us stronger as a family and we couldnt thank our familys enough for there support.
Hi, My name is Betty and I have a five year old girl named Sarah.My husband and I tried to get pregant for 1 1/2 years .From the time we found out we were having a baby we had nothing but problems with the pregency.At 20 weeks I was put on total bed rest.We deliverd Sarah full term by c-section.During the pregency we had ultrasound almost every week and noone knew she was ds.When we had her 11/28/96 she came into the world at 8lbs and 13 oz and 21 inches at 10:36 am.They still said she was perfect and she still is. The next day after after I Was nursing her,I asked a nurse to bring her to me because it had been awhile since she nursed.The nurse told me she just gave her a bottle and I got upset.The nurse who said she was a nurse for thirty years,Knows that these children can not nurse and will never become anything so we should just put her in a home now and go on with are lives.I had no idea what she was talking about my daughter was beautiful.She proceed to tell me that she just called the doctor to have a ds test done because my daughter had a couple of the signs.I got on the phone with my husband who was on his way in and my daughters doctor.The doctor said he did just get a call for the test and he would order it,but not to worry because no ds child ever weighs more then five pounds and my daughter did not have the large toungue or any other sighs other then she had small eyes and ears. Well my husband came in and got the baby and was holding her after I did nurse her.Sarah then turned blue in front of our eyes.All I could think of was that she was dieing in front of us.Well she did not have a hole in her heart but she did have a problem that they call PDA.As far as I have learned this is not linked to just ds children.My doctor did order the test and we had to wait almost 3 weeks to find out she had ds.In those three weeks I kept thinking she can't have ds because I was not over 35 years old ,( I was 27)I never smoked or drank and noone in either of our families had it.You can see how much I knew about ds. The test came back postive and we started the fight for our daughter.At four weeks old we got involved with Easter Seals and we started pt,ot,speech therepy had have gone three to four times a week since.I have never met another person since that nurse that have told me my daughter could not do something. She had her heart problem taken care of at 10 months old.She became really sick right before her second b-day and noone knew what it was.We finally found out she was Diabetic.We learned after the heart surgery that her life was in gods hands and he had a special plan for Sarah. She is now a very beutiful,smart,loving five year old that my husband and I thank god for every day when we wake up and every night we go to sleep. We learned early that we have to fight for what is best for our daughter and that we are the ones that knew our child.Never fall for the line"ds child can only do this or they can not do that".Every child is different and they all have different gifts.
Hi My name is Beth and my sons name is Patrick. He is 16 years old now and my pride and joy. I had him when I was 21. When I was going to my doctors for my regular check-ups I was told that everything was going smoothly. I went into labor which was three weeks early I called my doctor and he said it was to early for me to be going into labor. So his suggestion was for me to go home and put my feet up and stay in bed except when I had to go to the bathroom. I did and the next day recalled him and told him that didn't work and he tells me that I am then labor. To get to the hospital,so I do. When Patrick was born the cord was wrapped around his neck and he was starting to turn blue. The side of his face had already swelled up. He was running a fever and the doctor was not sure what was going on. I was told by one of the nurses that the doctor had made a comment that Patrick would not live so he wasn't going to fool with him as to cleaning all the muscus out of his throat and things like that. They weren't even going to let me see him till I got really upset and told them either bring him to me or I would go get him myself. I took Patrick home with no knowledge of him having Down Syndrome. To be honest with you I had never even heard of it at that time. at the age of 3 months when other babies are setting up and doing other things Patrick hadn't even rolled over for the first time. So I made him an appt. with the gentecis clinic. They showed me the markings across Patricks hands and the extra nap at the back of his neck and told me that he had Down Syndrome. We then sechduled an appt. for more testing. To make sure his heart and thyroid was all ok. He was a real trooper thru all of it. After I knew what I was dealing with and the extra effort I needed to help him achieve his goals I got in touch with some people who was so very kind to come to the house and give Patrick his physical threapy he needed and before long he was setting up and rolling over and then crawling. It made my heart smile to see him accomplish this. I am so proud of him in all that he does. Helping him and learning sign language with him has brought us really close. I am always interested in any articles or new news or old news on Downs. Thats something I am going to be learning about the rest of my life. But Patrick and I just take one day at a time and go from there.
hi, my name is justin and im 15 and i have friends that think i have down syndrome. I look like a normal person and i act like a regular person,There just jokin but they call me downy. They know that i dont have down syndrome and i dont , but i dont know that much about down syndrome and i was wondering if someone could e-mail me some information on the disease so that i could become more informed. Thank you very much
Hello, I have been posting on the Club 47 message board for a couple of months, but I have never had the chance to tell Kaden's whole story. 6 years is a long time, but I remember every second of my pregnancy and Kaden's birth like it was yesterday. At 16 weeks pregnant I had my first ultrasound. I was so impressed by that tiny life on the screen I checked to see if I could do it again and pay for it myself.I made an appointment for another one that same day. The next week I showed up and was going to give them the money for the Ultrasound and they told me that my doctor had called and that he ordered another one, so I didn't have to pay! I was glad about that, but during the ultrasound I could tell that something was different, the lady was acting weird.
I noticed that his little feet looked funny, and I asked her what was wrong with his feet? She told me my doctor would have to tell me.
Tears where pouring down my face at this time, because I knew something was wrong. They told me he was a boy, I was happy about that. I went straight over to my Dr. afterwards and he wasn't in the office so I still didn't know what was going on.
The next day the phone rang and it was his nurse. She wanted to make another appointment for me as soon as possible. She said that my AFP came out positive for DS but not to worry that a lot of AFP's came out wrong that they only indicated a risk.
I knew right then without another test that Kaden had DS, all I could think was WHEWWWWW I thought it was something terrible(I didn't know clubfeet was common in Kids with Downs, but I had heard of them being common in Trisomy 13 and 18.)
Two days later I went to see the Doctor and he came in kinda hurried with no type of commpassion at all his first words were "Your AFP was positive for Downs, the Ultrasound backed it up, the fetus has twisted feet thickness around his neck a really small head and deformed legs. You should consider termination"
I walked out of his office and never went back, instead I got a referral to Vanderbilt and met my new Doctor who supported my choice to not terminate NO MATTER WHAT.
Kaden was the baby meant for me. I knew that with all my heart. I had always planned on adopting a child with DS, my egg baby in High School had DS and I had wrote nearly every paper I ever wrote in School on DS. It was a little sooner than I planned, I wanted to finish college, but I knew that God had his hand in this and who am I to question his perfect will.
The next few months I had an ultrasound every week!! I rather liked that! Even though that they told me something else they found every time, getting two to three hour looks at my baby was so COOL! The worst news came a month before that he was born. I was told he only had 2 chambers in his heart and the other part was filled with fluid. I felt like a medical wonder with all the different people coming in and looking at him. That killed all the positive thinking that I was spouting out. I was scared to death!!!!!
I went home that day and I prayed
"Dear Lord. when they told me he had Down Syndrome, I never asked you to take that away. I have not only accepted your will for my life, but I am looking forward to being his Mommy.No matter what Lord, If it isn't your will Change it Just don't let my baby die!" No body can tell me that God didn't hear my prayer that day because that next week they found the other 2 chambers that wasn't there before.
Still the Doctors were cautious. They warned me that despite his gestational age that he was really small and that there was still fluid in his heart.
When I felt the first twinges of Labor I was scared to death. As long as my baby was safe inside me he was alive and part of me. I didn't call any body. I sat there and cried. Finally I started singing a song I heard as a child
"He knows my name he see's my heart, He knows each breath I take he knows My deepest parts. Before I breathed my first breath my Life was in his hands he has a plan for me"
The fear that I felt lifted and my Mom called and asked how I was. I told her that I had been in Labor all morning and she about flipped her lid!! She came and got me and we drove the 2 hours to the hospital.
Kaden came at 6:18 pm on April the 29 1994. He came out screaming his fool head off. Thinking back if I hadn't been so worried about Kaden I would have really been embarrassed. It was like a three ringed circus in there! There was a team of doctors for me and about 14 for Kaden. What I remember most was how close to God that I felt, and how I was getting mad at the nurse beside me because she was saying Push like you have to SH#*. She was ruining my "moment" Well like I said before Kaden came out with an attitude!! I noticed right away that he had a very long tounge and his feet were really twisted.
Well this is turning out longer than I expected, if you know me from the board I am rather long winded.
Any ways Kaden had cataract, club feet and not enough bile ducts in his liver. His heart was fine and he ate like a horse, but never gained a pound! I was breast feeding him and he was rather Lazy as a baby (can't say that for him now though) so I had to pump and put it in a bottle so he would get it easier. I can remember having all these contraptions hooked to me to try and fool him into nursing.
Well to make a LOOOONNNNGGGG story short. Kaden is the light of my life and I have never and will never regret having him in my life. He has given my life so much more meaning than I ever imagined. He is My PERFECT child. And a very wanted and loved child. I can't imagine my life without him. Thanks for listening to me. can't go on enough about my boy!!
Hi my name is Rhonda again. I wrote yesterday and I wasn't sure what to write. I was very right to the point and didn't get in to much detail about my pregnancy or anything else. I found out that I was pregnant when I was 16yrs old. Then when I was four months along the Dr.'s told me that I was going to have a child with Down Syndrome. I was at home by my self when they called and told me over the phone and also found out it was a boy. I was overjoyed that I was having a boy, but didn't know how to feel about the downs I didn't know much about it. I had problems through out my pregnancy in and out with pre term labor. I finally went in the hospital when I was 32 weeks and I was going to have him this time I was in labor for 72 hours. The hardest time of my life. Zachary was born at 3:45pm on April 17, 1994 he came in to the world weighing 3lbs 8oz and was 16inces long. Zach was in the hospital for 6weeks out of his life having surgery at 5 days old and nearly losing him. Now he is a 6yr old and very busy and full of love. We go through are hard times but we always get through them we stick together my husband and I. We also have a daugter who is 3yrs old and is perfectly normal. I wish when I was pregnant with Zach that I had some community support I guess they thought I wasn't going to take care of this little guy but I have and I haven't missed a day in his life and I wouldn't change it for the world.
My name is Rhonda I'm 23 yrs old and I have a 6yrold boy with Down Syndrome.His name is Zachary. Also in Dec.99 we learned that Zach was also found to have Autism. Our life with him as been a very hard time. I love him. I find certin times are harder then others but as of late we have had a harded times. Zachary is a very busy little boy he throws things, pull things off tables,countertops. He doen't talk and no one seems to think he will. He has high fregencey hearing lose, he has crossed eyes and refuses to wear his glasses or hearing aids. Zachary was born 2mos premuture he weighed only 3lbs 8oz. He had surgery at 5 days old on his intestines. We have been very lucky he has no heart problems. Zachary has brought a great deal of love in to our lifes and I'm very blessed to have him in my life. I know I'm young but I'm trying anyhting to get some help for him so I hope my letter will be regonzied and if anyone has any suggestions or comments please e mail me I'll take any help!! thanks so much for taking time and reading a brife overview of what life for me raising a child with down syndrome.
My beautiful baby girl w/DS was born after a harrowing labor & delivery on 11/1/87. She was very blue at birth; she almost died then. She spent 10 days in the hospital; I had to leave w/my arms empty. My husband and in-laws were told in a very cold way that she probably had DS. My husband insisted that he be the one to tell me after I came out of recovery from an emergency c-section. He told me with tears in his eyes and my heart broke. I was 34 years old and had waited 9 years for a miracle. Some miracle! I was in labor for 12 hours and dilated only 1 cm. The stupid dr. knew that I could not deliver a baby because of a surgery I had had at age 25; I had TOLD him in the beginning. But he let me go anyway. Then, after I got to the hospital on Halloween, I (fortunately) was the only woman in labor. The baby couldn't take the stress and the dr. finally arrived and ordered a c-section. The nurse did not even know where the instruments were, we had to wait for an anesthesiologist, pediatrican, etc., etc., to arrive. My dr. was hopping mad at them, but truly this was his own doing for not listening to my medical history. At 4:20 a.m. our Ashleigh was delivered. She was blue and like a rag doll, they told me. I don't know; I was unconscious. I did not get to hold her til over 12 hours later. She had pooped in her isolette the minute my wheelchair hit the door of the NICU, so they cleaned her and gave her to me to hold while they cleaned out the isolette. She looked at me and she looked sorta angry and puzzled. Then, she pooped all over me, 'cause she wasn't finished yet! And I didn't go "yuck" and drop her or something; I fell in total and complete love with this little angel. Chapter 2 will follow.
A mother's day I will never forget! I was 37 when I found out I was pregnant. The doctors insisted that because of my age that I MUST have all the tests done, amnio, ultrasounds, etc. I agreed reluctantly, but my husband wanted to know if there could possibly be any problems. We found out on Valentine's Day that Mikki (we named our darling daughter Mikayla) had Downs, I was just about 3 months. The doctors were awful, my family and my husbands family were awful. Everyone insisted that I must terminate the pregnancy, even my husband. As every mother knows there is a bond that you develop with your unborn child that is is almost impossible to describe. Anyway, long story, short, I found an OB doctor that was wonderful and we saw the pregnancy through together. Mikki was born a healthy, delightful, beautiful baby girl. Seconds after her birth it was determined that she had heart problems. At the age of 10 months she had open heart surgery to repair an ASD/VSD (10 holes total) and pulmonary stenosis. This was the roughest 13 days of my life. I never left her side. She was in ICU for 7 days. Shortly after they extubated her and removed the drain tubes, her bright eyes opened, she smiled and sat up for the first time. She had over 100 stitches in her chest and never cried or fussed. We had some other minor complications, but on the 13th day in the hospital she was discharged, healthy, happy and full of life. The 13th day was MOTHERS DAY. The two days that signify love, Valentines Day and Mothers Day. That was a Mothers Day that I will never forget. Mikayla has taught me more in 8 years than I could possibly teach her in my lifetime. She is so untouched by the evils of our world and she is so full of unconditional love and happiness. I could not imagine my world without her in it! Mikayla has opened my eyes to the importance of life and the priorities that we set.
Michael Wright leapt into this world at 6:05 am, Sunday, September 22, 1991. When I say leapt, that is exactly what I mean because he was born breech, with both his feet first!!Michael was born exactly 20 minutes after we got to the hospital! Needless to say, the Emergency Room paperwork had to wait for a few minutes!
In addition to being breech, Michael was also blue, and within minutes, they had whisked him away to the Intensive Care Nursery.
On top of that, after he was delivered, I started hemorrhaging, and very nearly needed a blood transfusion.
My husband did not have a good morning! Within 30 minutes of arriving at the hospital, his son is born breech and blue, fighting to breathe, and then his wife starts hemorraghing, and to top it all off, he's told his baby probably had Down Syndrome!
For me, about an hour after Michael was born, the pediatrician came in to talk to me, and said something about "genetic abnormalities". My response was "...like Down Syndrome?". He said,"EXACTLY like Down Syndrome", and then gave me a list of the various physical features why he thought Michael had it. He said there was a 95% chance that he had Down Syndrome, and only a blood test would prove for sure.
I finally got to see my baby when he was about an hour old. I was not sure what to expect, was kind of thinking he'd have very noticable facial features, and was very surprised to see that mostly, he looked just like his sisters.
I really couldn't see anything that looked different, except he had the epicanthal fold in the corners of his eyes. Like I said, all I could see was how much he looked like his sisters.
That morning, our church prayed for us (there was God's hand in the timing of his birth!!).
One lady prayed a very special prayer, that Michael would be like glue, binding the family even closer together, and not tearing it apart.
That has certainly been true.
Michael spent five days in the ICN, and was then able to go home. The reason he was blue at birth was that he'd inhaled some of the amniotic fluid, but he had no heart problems.
Michael has been VERY healthy all his life, with no heart or respitory problems. In fact, the only medical problem he has had was that he's needed four sets of tubes in his ears.
He's going to school now, with a full-time aide, and is doing very well. Next year he will be mainstreamed into the grade one class, at least part-time.
I could go on and on, but that would get too boring. Suffice it to say that Michael is walking, talking, getting himself dressed, and learning to read and write!!
Thanks for listening to me. Shawna
Hi! I am the person who wrote on March 2000. I am Native American with a litte girl who is ds. It's wonderful it read your stories and how these babies can bring joy, laughter, patience, slow down like my 4 year old son would say if I want to get things done and I do not take life for granted. I live for the moment with my family and my children. All is well and my baby girl is 17 months old. She is doing great. But not crawling, standing or walking. I am not worried about standing, walking and crawling. I know in my mind and heart that she will get there and do all things little children do. I found out 3 weeks ago from my mother that I did not actually walk until I was almost 2 years old. I am not worried she has not reach her goals in her developmental stage. All babies are different in reaching in their own milestone. She's healthy and thriving very well. She has 9 teeth and expresses all her teeth when she smiles. Also, she can sit and moves while turning circles when she hears a sound. An early riser in the morning and sleeps early at night. She has her schedule which I never set for her. Very lovable and cheery girl. All people who come into contact with her give her this smile and want to reach out to her. But first, they ask mommy or daddy for permission. She smiles to people and even those that have a bad day. My baby daughter brings smiles to people of all ages and I know she enjoys it. I live for the moments I have with my daughter and my son and my other big child, my husband. My husband is very understanding and enjoys his children and even protects his children more than I do. As for me, I'm doing well and emotionally I have my setbacks with ds. But I overcome it, by talking about it with my husband, mom, sister and all my extended family. We cannot express the joy she has given to our family and her extended family and even to people she has come into contact with our baby daughter. She is pure joy and when she smiles, we forget the troubles in the world we all experiencing. We will talk later and update you on my daughter. Bye now.
I was 33 when I had Lane. He was born by emergency c-section 8-20-98. I was scheduled for a c-section 8-27 but he decided to come a little early. It was funny, I've had had two other c-sections and almost forgot what labor was like. It finally dawned on me after half the day was over! When I called Jeff, my husband, to tell him we had to go to B'ville to have Lane he asked, are you sure? Four hours later we had Lane. They told us about 5 minutes after he was born they thought he had DS. You could have hear a pin drop! Lane also was born with congential cataracts. At 4 1/2 weeks he as given a pre-surgery medication, atrophine, and had a toxic reaction. I thought he was going to die in my arms on the way to the hospital. He was in ICU for two days and on the third we were life flighted to Tulsa. The doctor who prescribed the medication denied it was a toxic reaction and acted like it was no big deal so we took Lane to Kansas City. We almost lost him again after his first surgery and were there for 9 long days. They did about every test known to man and found out everything was fine on the inside! Thank God! He just snapped out of it. Lane has worn extended wear contacts since he was about two months old and they are great. He has not had any problems with them. He is now 20 months old and on his third pair. His eye doctor says that his eye sight is exactly where it should be at. The first few months were rough because I refused to put limitations on my son so I kind of ignored the rest of my family. (Rachel, 15, Toby 9, and my husband) After I realized that Lane was going to be fine, my husband almost left me for another woman. Talk about a slap in the face. Thank God she was married! We were seperated last August and then this past Decemember. Finally, he decided that he did not want to lose me or his family and came home. He said he was so sorry and how stupid he had been. It was really rough for a while but all the kids are fine. Lane's doctor said that mentally, he is up there with any baby his age and the genetic doctor is suprised that Lane understands everything you say to him. So far, he does not need speech therapy. His communication skills are outstanding and he is a big flirt! He has wild red hair that curls at his neck, that women can't seem to resist and big blue eyes! He is the light of my life and brings joy to everyone that knows him.
We started 7 years ago, we went to find out about adoption, and the social worker one day out of the blue asked us how we felt about Down syndrome children? We said we would think about it but did not see a problem, then we look up ever book on down syndrome we could find. A month or two later she called about a newborn still in the hospital, so we went to see him. we went each and every weekend for five months 100 miles. He had to have a heart surgary, but after the operation he did not come out of it and died. Then about six months later a man called to say he has pick us out of 50 cuples to adopt his five year old down syndrome son. He had the same hair eyes and even skin type as the baby and had also been through a heart operation. Jon is now eleven years old and is the love of our life. he is the sweetest little man you could ever know. It is like God said ok lets try him a little older. We could never have done this except that the baby's mom write the most loving note to say we should try agian when we got stronger, and we did.
Howdy y'all. My name is Toni and I work in a rehab hospital in Nebraska. I deal with many illnesses every day, that don't seem to affect me much but when I was a Freshman in high school, I lived in Oklahoma. I went to a school where we had a special ed class that interacted with us on a daily basis. There were four very special kids that noone really wanted anything to do with because we considered them to be really weird. We didn't pay much attention to them because the stayed in their own little circle and they didn't seem to notice that we didn't hang with them. Now that I look back I really regret that I didn't get to know these special kids any better. So any one that reads this and knows a special kid like the ones I have mentioned, don't hesitate to befriend them. Even if your friends don't support you, believe me, you won't regret getting to know them.
I am 25 and also got blessed with a little girl with ds. Her name is Bryn and she is 12 months old. I also have a six year old named Colin and what a wonderful brother. I found out that I was having a down syndrome baby when i was 4 months pregnant with the triple screen test. Then my docter wanted to do a amnio and that made it positive that she was down syndrome. I had lots of time to do research and get ready for my little angel to come. When she was born she was 7lbs 1oz and was born at 38 weeks. I brought her home right away because she didn't have any heart defects. When we got home she was doing great until she started getting yellow. She had jaundice and had to be hospitalized because her plateletts were low and her hemoglobin was high and is was from the jaundice and the Down Syndrome. Well then we brought her home and she got her PT and OT on a weekly basis. Then at 10 months she was hospitalized again because she had gotten RSV, Which is a common cold but when it effects children it attacks their lungs. Kids only get it till their two. Well anyway Bryn had to get rushed to the childrens hospital of Philadelphia because she was working to hard to breathe. She had to get put on a life support machine for a month and the docters just kept telling me your daughter is a sick little girl. With lots of prayer and hope my angel pulled through. And i knew she would because she is so strong willed. I could keep going but this is to much to read already. She is doing wonderful know and is very healthy. Down Syndrome is such a bueatiful thing and god blessed all of us with it. I feel so lucky to have her it's like winning a million dollars.
Hi everyone! I want to tell you how my daughter Haylie has changed my life! I'm 21 years old. And before I got pregnant for her, my life was all about partying. Life didnt mean much to me at that time. Of course after I found out I was prenant I stopped partying, but planned on doing it as soon as I was out of the hospital after her birth. When I was 7 months, I had an ultrasound done. Something about her heart was abnormal They did tests that soon confirmed that she had DS and a heart defect. This broke my heart. People always asked me if I wanted a girl or a boy, and I just said "A healthy baby".But she wasnt going to be healthy. I had a breakdown, I didnt think that I could handle it. Then I heard a voice saying"I would not have given you this child if I didnt think that you could handle it" From then on, I have asked the Lord to come into my life and give me stregth. Haylie is now 5 months old and the most beautiful baby I have ever seen! Last week she had her first (of three) heart surgery. She did GREAT! It has been really hard, but I never stopped trusting in God.She has made me realize how valuable life really is. She has been my miracle, because of her,I have given my life to the Lord.And he has been good to me! Karren
HELLO, THIS IS OUR FIRST TIME ON THIS WEB SITE, FIRST OF ALL ITS GREAT.. TO BEGIN MY STORY, I WAS 22 YEARS OLD AND MY HUSBAND WAS 25, ( OUR ONLY CHILD FOR 6 YEARS) . OUR SON MICHAEL WAS BORN ON 3-22-91 FULL TERM BABY, PERFECT PREGENCY, HARD LABOR. NOT LONG AFTER OUR SON WAS BORN --WITHIN MINUTES, THE DOCTOR SUSPECTED SOMETHING WAS WRONG , THEY ASK A LOT OF ODD QUESTIONS. OUR FAMILY DOCTOR THAT HAD DELIVERED THIS CHILD TOLD US HE THAT IT WAS MOGALOID, I HAVE NEVER HERD THAT BEFORE I HAD TOLD MY HUSBAND THAT IT IS EITHER SOMETHING REALLY BAD OR NOT SO BAD, ACOURSE I WASIN SHOCK. THE NEXT MORNING A SPECIALIST MCAME IN A CONFIRNED THAT OUR LITTLE BOY HAS DS.WE WERE TOLD TO GO HOME AND LOVE THIS CHILD THIS CHILD WILL NEED YOU TO GIVE ALL THE ATTENTION TO HIM. TO MAKE A LONG STORY SHORTER,WE TOOK OUR CHILD HOME, AND ENROOLED HIM IN DIFFERENT THEREAPIESWHEN HE WAS 2 WEEKS OLD, I DID HRS AND HRS OF RESEACH I AND MY WHOLE FAMILY TREATS MICHAEL NO DIFFERENT THEN ANY OTHER CHILD THAT DOESNT HAVE A DISABLITIES, WITH A LOT OF GUIDES AND SUPPORT, HE KNOWS HE HAS DS, THAT IS STILL NOT AN EXCUSE NOT TO TRY , WE HAVE MADE OUR DREAMS FOR HIM AND HE HAS EXCEEDED THEM HIMSELF. WHEN MICHAEL WAS 3 HE WENT TO A SPECIAL SCHOOL FOR 3-5 YEARS OLD W/ DISABILITIES(IT WAS WONDERFUL,EXCEPT THAT THERE WAS NO NON DISABLE CHILD IN THIS SCHOOL. WHEN HE WAS 5 HE WENT TO A PRE--K CLASS AT RISK CHILDREN. WE WERE FIGHTING OUR WAY INTO FULL INCLUSION . HE STRATED KINDERGATEN IN HIS HOME SCHOOL W/ THE NEIGHBORHOOD KIDS; HE HAS A AID, KINDERGATEN AND 1ST GRADE WAS A LITTLE DIFFICULT MORE FOR US THEN FOR MICHAEL .HE IS NOW IN 2ND GRADE WITH AN AID HE GOES TO SPEECH / RESOURCES ROOM FOR MATH ALL THE CHILDREN LOVE AND TREAT HIM LIKE THE OTHERS,. he also is involved withchallenged baseball.HES BEEN RIDING HORSES FOR THEREAPHY SINCEHE WAS 3. HE NOWS COMPETE IN 4H AND SPECIAL OLY. (WE ARE FORTUNATE TO HAVE A GROUP HERE IN ILL THAT HELP CHILD WITH THEREAPY YTHRU RIDING.) michael is at a 1st grade levelin school. i have learned so much from him .. AND THE WORLD IS LEARNING FROM OUR CHILD WHEN WE GET THEM INVOLDEDWITH THE WORLD. MICHAEL IS NOW 9 , HE HAS A LITTLE BROTHER THATS 3-- FOR 5 YEARS THAT DECISION TORE AT OUR HEARTS, WE FINAL SAID IF MICHAEL HAD NOT HAD DS WOULD WE HAD ANOTHER CHILD . PROBABLY SO. SO WE DID HIS NAME IS DILLON, MICHAEL SAYS HIS A BRAT AND WANTS ME TO LOOK UP INFOR THAT TOO. MICHAEL HAS TAUGHT US LIFE GOES ON AND SEND ME NO PITY I WILL MAKE IT IN THIS WOULD WITH SUPPORT , AND TONS OF FRIENDS AND FAMILY JUST KIKE MY FRIENDS WILL. MICHAEL ALSO HAD HEART SURGERY WHEN HE WAS 14 MONTHS HE WAS SENT HOME 10 DAYS LATER AND HAS BEEN THRIEVING EVERY SINCE. PLEASE EVERYONE THAT READS THIS MESSAGE . DREAM FOR YOUR CHILD HELP YOUR CHILD DREAM TOO , THEY COULD BE SIMPLY DREAMS OR A HUGE DIFFICULT DREAM ,BUT DREAMS DO COME TRUE WHEN WE BELIEVE IN OUR CHILDREN. WE WILL ALWAYS HAVE BUMPS IN THE ROAD , BUT THAT WILL MAKE US WORK HARDER. SO IT WAS SO LONG.......MORLEY FAMILY FROM MOLINE, ILL
To punchbuggiebabie: I think you are very special and brave to persue the calling you feel. I have a brother with DS who is 32 years old now. Throughout the early years, I could tell you all the cuddly stories of the love and affection which these children have to offer. Currently, my brother still lives with my parents of 70 plus years. Things have not been so good lately as, through the years, he has regressed and reclused. Over the past nine months, Michael has had four incidents of violently pulling my mothers hair. He is remorseful after the fact, but my poor mother, who loves him to no end, must now live in fear for her safety. Neurological and psychiatric exams have not provided any concrete answers to this recent behavior. There is truly not enough people dedicated to DS issues. The doctors mean well, but DS just is not a big priority and there are still many unanswered questions to the care and treatment of DS. I wish you the best of luck and pray that this gift you have to reach out to DS blossoms for both you and the people you work with. I know that your efforts will make a difference. Regards, Tom Sanders tosanders@seidata.com
HI EVERYONE. WHEN I WAS JUST 25, MY HUSBAND AND I HAD A BEAUTIFUL SON. I HAD ALL THE USUAL TESTS TO MAKE SURE THE BABY WOULD BE HEALTHLY AND THE DOCTOR SAID THE BABY WAS FINE. DJ WAS BORN ALMOST A MONTH EARLY BY C-SECTION, AND THE MOMENT HE CAME OUT, THE DOCTORS SAID, YOUR BABY IS JUST FINE AND HEALTHY. I HAD TO STAY IN THE HOSPITAL FOR 4 DAYS AND ON THE 2ND DAY THE DOCTORS TOLD ME THEY THOUGHT HE MIGHT HAVE DS. I JUST COULDN'T BELIEVE IT, BECAUSE I KNEW THAT OLDER WOMEN USUALLY HAVE CHILDREN WITH DS. SO WE FINALLY TOOK DJ HOME AND I FELL IN LOVE WITH HIM. A DAY LATER, I RECIEVED A PHONE CALL FROM THE DOCTOR WHO SAID THAT DJ HAD DOWN SYNDROME. FOR ABOUT A HALF HOUR, I WAS HYSTERICAL. I WAS HOME ALONE WITH THE BABY WHEN I GOT THE NEWS AND I SCREAMED AND CRIED FOR A HALF HOUR. THEN I LOOKED AT DJ AND REALIZED THAT HE WAS A MIRACLE. MY HUSBAND MADE ME FEEL REALLY GOOD AND SAID, " DON'T WORRY, EVERTHING WILL BE ALRIGHT AND DJ WILL BE FINE. NOW DJ IS 4 YEARS OLD AND I LOVE HIM SOOO MUCH. EVERY LITTLE MILESTONE MEANS SO MUCH. HE IS HUMOROUS AND VERY LOVING. NOW HE'S LEARNED HIS ABC'S BUT WILL ONLY RECITE THEM WITH ME. HE'S A MAMMA'S BOY AND GOD GAVE ME DJ BECAUSE HE KNEW I WOULD BE THE PERFECT MOTHER FOR HIM. I AM VERY PATIENT AND UNDERSTANDING AND LOVING. DJ IS MY ONLY CHILD AND I AM COMMITTED TO MAKING HIM AS INDEPENDENT AS HE CAN BE. I MAKE HIM FEEL THAT HE CAN DO ANYTHING AND HE CAN IF HE TRIES REALLY HARD. HE'S THE LOVE OF MY LIFE AND I WOULDN'T TRADE MY LIFE FOR ANYONE ELSE'S.
Well I started a story just a few minutes ago and I have know idea where it went. But, I'm out of time right now cause I have a 3yr. daughter with ds and she wants me right now. Hope to come back and put my story in.
A Special Sister Seven years ago I was Blessed with a little sister named Halee. We found out that she had Downsyndrome the day she was born at a local hospital near our house.Halee is a very special part of our lives. She went to an early children center where she learned how to be artistic and how to use herr imagination. She went through heart surgery when she was only seventeen months of age, before her surgery she had to wait until she got better it almost took two to three months before the doctors decided it was now or never because my sister wouldn't get better. Aftr the surgery he came home a month later. We had to reteach her how to sit up and how to talk all over again. November 23, 1999 she tuened seven and is doing home school. Shes teaching us more about her condition than what we ever woul of expected.
HI, MY NAME IS DELMI I HAVE A DAUGHTER AND HER NAME IS ASHLEY SHE IS 3 YEARS OLD . SHE IS MY FRIST AND ONLY CHILD UNTIL NOW . WHEN SHE WAS BORN I DID NOT KNOW SHE WAS A DS BABY UNTIL BIRTH. SHE WAS BORN AT 34 WEEKS. SHE WAS 3POUNDS AND 13 WAS HER LENGTH SHE CUOULD FIT IN A SHOE BOX SHE WAS SO SMALL BUT AT THAT MOMENT WHEN THEY TOLD ME SHE WAS A DS BABY THAT DIDNT REALLY WORRY ME WHAT WORRIED ME WAS THAT SHE HAD AN INFECTION AND HER BLOOD CELLS WERE VERY LOW SHE WAS DIEING AND IT HURT ME SEEING HER SO LITTLE TRYING TO FIGHT FOR HER LIFE BUT WHEN THE DOC. DIDNT GIVE ALOT OF HOPE THE BIGGIEST MIRIACLE HAPPEND WITH ASHLEY.GOD HEARD MY PRAYERS AND FROM ONE DAY TO ANOTHER ASHLEY STARTED TO RESPOND TO ALL THE MEDICINES AND SHOWED THAT SHE REALLY WANTED TO LIVE AFTER THIS SHE WAS IN THE HOSIPTAL FOR ONE MONTH AND THEN WE TOOK HER HOME BUT SINCE THAT DAY SHE HAS BEEN A HELTHY CHILD. AND FOR ME THE BIGGIEST JOYS ARE WHEN I SAW HER WALK AND WHEN I SEE HER DO THINGS THAT MAYBE DONT COME AT THE MOMENTS THAT OTHER CHILDREN THAT DONT HAVE DS DO BUT SHE DOES THEM AND THAT MAKES ME HAPPY . ASHLEY HAS BEEN A BLEESSING TO OUR FAMILY AND WE GIVE THANKS TO GOD EVERYDAY FOR HER. THANK YOU DELMI
When my son was born, my husband couldn't accept the disability and gave me a choice. I could either keep my husband or I could keep the baby. I chose the baby. That was nearly 12 years ago. I've never regretted my decision. My son, Matthew is the joy of my life. Unfortunately, I have discovered that the small town in which I live also has a discriminatory attitude towards people with disabilities. It has been particularly difficult trying to ensure Matthew recieves an appropriate education. When he was 6 years old, I wanted my son to learn how to read and write. The public school district told me, "These kinds of kids can't do that." They refused to include any academic goals on his Individualized Education Plan. They preferred to keep Matthew segregated in a special education class that amounted to no more than "daycare". I filed due process proceedings against the school and won. Still nothing changed. Because they still would not follow state and federal laws regarding the education of children with disabilities, I filed complaints with the state dept. of education against the school district. When the state began to investigate, the school district got nervous and offered to pay my son's tuition to any private school I chose, just to get rid of me. Because their attitudes towards children with disabilities were so negative, I accepted their offer. My son, who is now eleven, attends a wonderful private charter school. And YES! He can read and write. He is the only student there who has a significant disability, but he studies the same subjects as all the other children. He is even on the honor roll! The point of sharing this with you is to demonstrate that ALL children are capable of learning if they are given the opportunities and the support they need. My battle with the public school district lasted nearly 3 years, but it was worth it. Matthew is learning more than I ever thought possible and unlike the public school, he now has lots of friends.
Jennifer was born on WEdnesday, January 26, 2000 at 3:36am. My pregnancy was perfectly normal and my triple screen showed no signs of any problems. Jennifer was born at exactly 38 weeks gestation. She weighed in at 6 lbs 7 oz and 18 3/4 in long. I had had labor pains that Sunday for the whole day and went to the hospital at 5 in the evening only to have them stop when I got there and get hooked up to the monitor - so they kept me for five hours (her heart rate was too calm for their liking) until my doctor came in, looked at the monitor and said - send her home - the baby is just "laid-back". I went home and cried - I was so tired of being pregnant. Wednesday morning at 12:30am I awoke with major pains and gas. So I thought - this can't be it I just have a big gas bubble in my tummy. Around 2:30am I told my hubby to call the doc and we loaded up our boys to take them to our friends house. Dropping them off around 3am and arriving at the hospital around 3:15, we drove up the emergency ramp, since we knew that the front doors were locked and didn't want to wait for someone to open them. Gary got me a wheelchair and wheeled me to the birth center. When we got to the birth center, they had us at the desk asking for info and I had to stand up - the nurse told me to sit back down and I couldn't so she grabbed my arm and rushed me into a room. (I guess a week earlier someone gave birth in the hallway, so she was nervous.) She checked me and immediately started breaking down the bed and grabbing frantically for everything. I just said "What? Am I close?" She told me that I was at 9 1/2" and ready to go. Next thing I knew my doc rushed in told me to push once and then stop - did that. Then he told me to push again - and there she was. She ended up getting rushed to NICU - she had a collapsed lung and her O2 was way low. She also had "thick blood" - which was explained as very high iron in the blood to me. About 3-4 hours later a pediatrician on call for my regular one and my ob came into the room together to tell me that the lumg problem was much better and they were going to "pull" some blood off and put saline in to make the blood thinner. They also lowered the "boom" about suspecting downs. I was very suprised to say the least. I got upset when they suggested that I not get my tubes tied like I was planning. Why the flip not? Like downs would make a difference - what was I supposed to do , throw her away? Little did I know what they meant was to add less stress to the current situation - but I was already on the defensive and sticking up for my little one. So I did get my tubes tied. My hubby was so upset about the downs - it was hardest on him. He had a brother who was severly retarded and autistic who was institutionalized years ago, and he never saw him again. We are all doing fine now. Jennifer was out of NICU and home within 6 days. At 5 weeks she weighed 8 lbs 12 oz and was 20 5/8 in long. She is growing on the normal growth chart, eating well, lifting her head and her occ ther and intervention specialist as well as the pediatrician are amazed at every visit - she is ahead socially than most 2 month olds and right on track physically - if not ahead - also. Not that I expected any different! All my children have been exceptional, and I knew downs wouldn't stop Jennifer - just by looking at her beautiful face - she told me she'd be fine. God works in mysterious ways and I thank him every day for his wonderful gift of letting me be the one to raise Jennifer. Jennifer has two wonderfull big brothers, Jeffrey is 9 and Kenneth is 16 months. Jeffrey has emotional problems at school and has been in special ed since first grade. We are making progress with him - he has generalized anxiety disorder which had been misdiagnosed for years as adhd, odd and many other things. He is kind and caring and loves his two younger siblings - he'd rather take care of them than do anything for himself. Kenneth had head injuries at birth from the vacuum pump popping off his head twice. He was in NICU for a month and seems to be doing fine now. THe doctors expected brain damage, but we find that he is way ahead on everything also. Keeping our fingers crossed that all keeps going well for him. Seems that Jen's downs is the least of my worries children wise. She is happy and healthly and so cuddly! That's our story! Long winded person that I am.
MY NAME IS KRISITNA DIGANGI. I AM 13 YEARS OLD. I AM CURRENTLY IN JUNIOR HIGH SCHOOL. I HAVE NOT GIVEN BIRTHT TO A DOWN SYANDROME CHILD, BUT I HAVE ALWAYS WONDERED ABOUT CHILDREN WIHT THE DIEASE Ds. SOME THINGS I OFTEN THOUGHT ABOUT CHILDREN WIHT DS IS.... WHY DID THEY ALL LOOK DIFFERENT THEN ME AND MY FRIENDS? WHY DO ALL CHILDREN WITH DS ALL LOOK THE SAME? WHY WAS EVERY DS CHILD I HAVE SEEN IN MY ELEMTARY SCHOOL IN SPECILA ED. CLASSES WIHT MORE THEN ONE TEACHER?BUT MOST OF ALL I WANTED TO KNOW WHO THEY WERE, DO THEY FEEL, CRY, BLEED? ARE THEY JUST LIKE ME?!?!?THESE ARE SOME OF THE QUESTIONS AS A CHILD FROM THE AGE OF 5 YEARS OLD TO NOW(13 YEARS OLD)! THE TRUTH IS I ALWAYS WANTED TO KNOW BUT I NEVER GAVE ,Y SELF THE CHANCE TO ANSWER MY OWN QUESTIONS THAT I REALLY WANTED TO KNOW THE ANSWERS TO! SO FOR ONE TIME IN MY LIFE I HAVE DECIDED TO STOP ASKING QUESTIONS AND START FINDING WAYS TO ANSWER THEM! I ALWAYS THOUGTH THAT THERE WAS SOMETHING SO BEAUITYFUL ABOUT CHILDREN WIHT DS. I ALWAYS, STILL EVEN UP UNTILL THIS DAY BEGG MY PARENTS TO ADOPT A CHILD WIHT DS. I DONT KNOW WHY BUT I JUST THINK THAT THEY ALL HAVE SOMETHING SO SPECIAL ABOUT THEM! THATS WHY I AM WRITING THIS LETTER! I HAVE READ ALL OF YOUR STORIES AND I HAVE TO SAY ALL OF THE STORIES TOUCHED ME AND MADE ME FEEL HAPPY BECAUSE I THINK I FINALLY KNOW WHAT I WANT TO DO WITH MY LIFE! I WANT TO DO RESEARCH ON CHILDREN WITH DS. I WOULD LIKE TO ASK EVERY ONE WHO READS THIS THAT IF THEY CAN JUST WRITE TO ME AT punchbuggiebabie AND ANSWER SOME OF MY QUESTIONS AND TELL ME ABOUT YOUR STORIES I WOULD LOVE IT ! I WANT TO SAY TO ALL THE PARENTS OUT THERE THAT AM SURE THAT IT MUST BE HARD AT TIMES BUT GOD DOES THINGS FOR A REASON! GOD BLESS YOU ALL AND PLEASE WRITE ME BY THE WAY THANK YOU TO WHO EVER STARTED THIS SCITE!
MY STORY SOUNDS A LOT LIKE SOME OF YOURS , I WAS 33 WHEN I HAD MY LITTLE ANGEL NICOLE ,SHE IS NOW 5 YRS ,SHE WAS BORN 2 MOS EARLY ,AND LIKE MOST OF YOU I DID NOT KNOW SHE HAD DS UNTIL SHE WAS BORN , SHE HAS 2 OLDER BROTHERS, THE WHOLE TIME I WAS CARRYING HER ,I WAS SO SICK ,I THOUGHT THAT IT WAS JUST MY AGE ,AND WORKING , I WENT FOR SEVERAL ULTRASOUNDS WHEN I WAS PREGNANT WITH HER ,AND THEY NEVER SAID ANYTHING ABOUT HER HAVING DOWNS , SO I WENT INTO LABOR 2 MOS EARLY , AS SOON AS SHE WAS BORN ,THEY TOOK HER IMMEDIATELY OUT OF THE ROOM ,SHE COULD NOT BREATHE ON HER OWN ,HER LUNGS HAD NOT DEVELOPED COMPLETELY , ABOUT 30 MIN MIN LATER ,DR CAME IN ,AND TOLD ME AND MY HUSBAND THAT ,SHE HAD FEATURES OF A DS CHILD, WHEN I WAS TOLD THAT ,I THOUGHT MY WORLD HAD ENDED ,I HAD NEVER CRIED SO MUCH AND SO HARD IN MY LIFE , THEY TOOK HER TO A HOSPITAL 3 HOURS AWAY , THE NEXT DAY I WENT TO SEE HER ,IN NICU, WHEN I WALKED IN AND LOOKED AT HER ,I SAY THE MOST BEAUTIFUL BABY IN MY LIFE. I PICKED HER UP, AND CRIED ,AND TOLD HER HOW MUCH WE LOVED HER ,AND EVERYTHING WAS GOING TO BE OK, WELL TODAY OUR NIKKI IS A HAPPY&HEALTHY 5 YR OLD ,SHE HAS NO HEART PROBLEMS ,SHE DOES HAS CONGENTIAL GLAUCOMA ,WHICH SHE HAS HAD 4 OPERATIONS ON HER RIGHT EYE , SHE IS THE MOST WONDERFUL THING THAT HAS HAPPENED TO US , THERE IS ANGELS ON THIS EARTH ,AND WE HAVE THEM , THEY ARE SO SPECIAL ,
I´ve just found all theese letters from parents who have children with Down´s Syndrome, and I just want to say thank you to every one of you who are generously sharing your thoughts and feelings. I´ll come back soon and tell our story soon, too. Thank you!
I have been visiting the unomas site for about a month and this is the first time that I have had the time to add my Story: so here it goes:I was 33 years old when I found out that I was pregnant with Number 3. It was quite a shock because we had just made the decision to stop with 2 children, both boys ages 11 and 8 at the time.I made the appointment for my husband to get the "the little snip"I found out 2 days before he was to have the surgery that I was expecting. I was so upset about it, it took me almost the entire pregnancy to get over it...thanks to a couple of great friends that were very supportive I started to get excited about it. I had a normal pregnancy, all my test were good, I felt great.
At 35 weeks gestation I went into labor headed to the hopital scared to death that something was wrong because I wasn't due for another month. Clark arrived 2 hours later weighing in at 5 lbs and 11 ozs( pretty big for an early one) He was so addorableand looked like my other two with his blonde hair, blue eyes. The Pediatrician came in to talk to us 2 hours later and told us that she suspected that Clark may have Down Syndrome, they noticed that he had some features that were promanant in Down Sndrome babies. She told us that they would do a blood test to check. It didn't even sink in until the next day when the Blue episodes started...He was cynotic and they couldn't get his oxygen levels up. They suspected that he had a heart defect and he was flown by helicopter to John Hopkins Hospital in Baltimore. So here I am running to Baltimore after having a baby not 12 hours before to be with my baby and talk to Pediatric Cardiologist. He had AV Canal and tratrology of Fallot. He only stayed in the NICU for 5 days and they let us bring him home. He did very well and his brothers just loved him dearly...still do. He had Heart surgery when he was 7 months old. Clark is now almost 3 years old!!! He is a cutie pie. He will be starting Special ED pre K in the fall ( where did the time go).
Anyway We have been blessed with this child. He has taught us many things and I am sure the education will go on and on. We had alot of wonderful family and friends that are so supportive of him and us...they are learning from him too. God sent him to this earth for a purpose.....I am so glad that he gave him to us!!!!
Lorena Zecher
I am a mother of child with DS. He is a beautiful child. I just wanted to ad to this site that I have heard alot of comments from people since my son got born and one of them is this typical fraise "special children go to special people" Sometimes it makes me very bord to hear this because I am not more special then anyone in this world. But one thing is that I want to say and that is my experience after hearing others oppinion on having a disable child is that " People become special by having special child" Because they have to learn things that not everybody have a chance to learn and that is for one thing, learning to except the surprises and dissapointments of a dream that was never there but became something else and that makes us understand that we are able to ajust to diffrent life then we are use to. Then when the child is a part of our life then we never want to change that again. Changes are the difficult part of our life that is for sure.
Hi everyone! I have such a typical story, but I'll share it anyways, and it's gonna be long! :)...I am 36 years old, married to a great guy for 15 1/2 years, and have 4 children, Tony(12 1/2), Erik(10), Karly(3 1/2) and Kelly(6 months). Our little Kelly has Down syndrome.
When I became pregnant, it was a shocker. The first thing I could think of was my age and the risks involved, first thought was 'down syndrome'. Weird, huh? I am not a 'beautiful, feeling great' pregnant person. I retain a LOT of fluid, and feel terrible, and very crabby(just ask the family!), so I wasn't too thrilled at first! I was VERY sick for about 3 solid months, the toilet and I were closer than I ever wanted to be! Later on in my pregnancy, I just kept having the feeling that this child was different. I refused any testing, had no maternity coverage, so I didn't even do ultrasound. In my mind, it wouldn't have been an option to even consider termination anyways, so I thought 'what's the good in it - if something appeared to be wrong, I would project the worst anyways!' The last 3 months of pregnancy were kinda scary, the baby didn't move much, NO hard kicking like my other 3 kids. Alot of times baby would hardly move for a whole day. I called the doctor a couple of times, scared, but then sure enough, she would move! One evening, about a month before baby was due, I found my Erik crying, and asked him why. He said "I'm scared - something' wrong with the baby" ! Wow, we both cried, cause I felt the same - what a connection!!!
Kelly was born on Sept 24, 1999, on her due date at 4:14 a.m., after a 1 hour and 33 minute labor. We were in the hospital for 25 minutes before she was born, as a matter of fact, they checked me, laid me flat, said "don't push, we have to call your doctor". Luckily, he lived VERY close, and got there within 15 minutes, said "push", and she was born! A whopping 9 pounds - OUCH!
John(daddy) and the doctor both had weird looks on their faces after she was born, both could tell immediately by the thickness on the back of her neck, but I didn't know why the odd looks. But we were THRILLED that we had another girl. The nurse immediately took her to the little heated baby bed about 10 feet away, and they were all rubbing her and giving her oxygen to get her to breath. They were all very quiet - I was scared something was wrong. Then the pediatrician came in and checked her over. He was wonderful! He came over, and kindly told us that he suspected she had Down Syndrome. You know, It was like a dream. I immediately was scared that she would die, cause all I could think of were heart problems, and she was a purpley color. I told him "I don't care - is she healthy?" . So they took her and ran an echocardiogram, and a bunch of other tests. We were THRILLED to find out that she had NO physical problems, other than hypotonia(low muscle tone), but even then, they said her tone was very good for Down syndrome. We were blessed! They told us that she may not be able to nurse because of low muscle tone. My response was "She HAS TO eat, so why wouldn't she be able to nurse? What's so different about the bottle that would make that easier?" Well, to shorten this, I never gave up, and she still is nursing!!!
I must say, I was NOT devastated. John was more scared than me, he had NO IDEA what to expect. I had had a cousin with Ds, who died at age of 33 from heart problems. I vowed right then that I would do whatever I could to help Kelly to be a happy, healthy, 'normal' person!
Kelly has weekly PT, bi-monthly OT & DT, and will start speech therapy by 12 months. She hasn't been sick one day in her life! She's rolling around on the floor and eating baby food @ 6 months - right on track! She is AWSOME, I can't tell you how strong the bond is for me, and for everyone else in the family for that matter, with Kelly. She is my little angel, God Blessed US when he gave her to us!!! I feel 'honored', because Kelly is teaching us and everyone who meets her about unconditional love. My children adore her, and they look at others with special needs now as individual people, just like us 'typical people'(I hate that term- we are ALL different from each other!) with a brain and a heart and feelings, and they don't think of them as being 'different or weird' anymore.
For all those expecting a child with Ds, or know someone who is, or have a new baby with Ds, PLEASE allow yourself to feel the love & joy this child will bring, and know that this child is unique, just like each and every other child is. WE ARE BLESSED! There is a bright future for our children, if we give them that chance! I look forward to the challenges we may have in the future with Kelly, maybe this is one of my purposes in life!?! Go see her on the UMfriends board! ~~(((HUGS to all!))) Becky
Our son (Tyler) was born January 9, 1999. I had no major difficulties during my pregnancy except for high blood pressure. After having 3 other children from a previous marriage (Andy 12, Adam & Adrian 9 1/2) I assumed that everything was O.K.. I was asked early in my pregnancy if I wanted a standard screening test. After talking to my family Dr. I decided not to have it done. (I never gave it a lot of thought) I was more focused on having a single baby rather than another set of twins again. At 38 weeks I delivered Tyler. Everything went very well. He was born with the cord around his neck, but the Dr.'s assured me he was O.K.. A pediatrician visited Tyler the day he was born and mentioned a couple of things such as a little bit of a webbed toe and folded over ears. He very gently mentioned Down Syndrome. He thought that Tyler sould have a different crease in his hand though. We thought because his hands had normal creases that everything was fine. A couple of days later at an appointment with the pediatrician he suggested a blood test to check for Down Syndrome. The results came back positive for DS. As hard as it was to understand the genetics of DS, we had to try to understand Translocation DS. The extra #21 was stuck to the #14. I was devistated to say the least. After learning more about DS and watching Tyler develop, I was at ease. When I did research on DS everything said I was blessed with this baby, and I would be amazed at how well things went. I really thought that everyone was just trying to make me feel better. Guess what! They were right. Tyler is 14 months now, and what a joy he has been. He is developing within the "normal" range. The only thing I regret is the fact that I allowed myself to get so upset. The was no need to be that upset. Our child is no different that any other child. It just takes him a little longer to get to his destination some times. If there is anyone out there with some experience with Translocation DS I would love to hear from you, and if there is anyone with a new DS baby that needs someone to talk to I would love to listen.
Hailey was 5 years old March 9th. She is my youngest of three kids Alise 7, JJ is 9. I did not know until delivery about the ds. She was a big baby 8lb 13oz which caused some fluid to get in her lungs because she was born quickly. They took her to NICU to keep a few hours, only for 3 residents all about 24 years old maybe they were something else to tell me she had Downes. My husband had left to sleep it was 1am in recovery, my doctor is gone and this young kid tells me this. I was 28 years old never thought about anything going wrong. My husband came back up, we were so upset. I can go on about the way we were treated and misinformed but I will wrap this up. Surely, everyone here has had some horrible medical experience. Hailey had two small holes in her heart, they closed. She does not have any real DS serious problems we were blessed that way. She is an actress, her teacher tells me to put her in acting school. Hailey puts on little shows for anyone in my home. She really amazes me with her drama and her acting she can also make herself cry to get Daddy to come running then smirks at me while he is hugging her (real tears too). She makes everyone laugh. Hailey is a computer whiz, I can buy any new game, she will come home load it up and take off with it as if she has been playing it for months. Her speach is really getting alot clearer. Her muscle tone in her mouth was the only real muscle tone weakness she had. Doctors said her being large at birth compared to alot of DS babies helped her. She is the love of our life and has taught us so much. I am now looking to open a Down Syndrome Daycare Center so parents can go back to work or get a break. I did not trust anyone with Hailey so I worked part time nights offand on. It is hard not to have two incomes. I feel this would help us all out. The kids will have a bond, parents relief, and myself happiness to help and be surrounded by these lovely little people everyday. Sorry, I got winded.
My name is Eileen...Im over 40.....and was very surprised to find out we were expecting..i have three healthy children...Shauna, a freshman in college- Gabriel, a 14 yr old basketball star- and Little Bill-13 yr old ex sport star...now fantastic student.After studying aap (advanced age preg) i decided to have the amnio, and was devistated to learn that the baby im expecting July 1, carries the extra chromosome.
Larry, thank god, took everything in stride. He wanted to know what to expect, and went about his business. Nothing ruffles that man's feathers!!
I am preparing, and worried, and having some trouble allowing myself to get excited about this pregnancy. She doesnt seem to kick as much as the others....but "flutters" alot.
I had to take an early lunch from work last week, one of the people I work with, has friends who had a baby, who was born with more chromosome problems then I was looking at. They fixed him up...and sent him home to die. The part that hurt me so bad (in addition to the loss that these young parents were having to deal with) was the way that he described the baby, and the attention it got from the rest of the staff. The baby was born with six fingers and toes, and that's all anyone could focus on. They discussed him like some kind of circus side show. Nothing bad, just verbal gawking.
How do you deal with this?? I just lost it. Started crying. I dont want my molly to be something that people feel sorry for...or cant see as my baby, but an oddity.
I also have not told my boys. My eldest daughter knows, and is incredibly supportive, shopping, even volunteering as a big sister to d.s. children...to prepare herself to be the ultimate big sister. I thought i would tell my boys right away, but now find myself dragging my feet on that one. The youngest had a very hard time accepting the pregnancy in the first place.
God I am so scared.
If any of you can relate, feel free to email me.
Thank you for this sight. It helps so much.
Eileen
HI MY NAME IS KIM. I ALSO HAVE A DS BABY, IN NOVEMBER 1997 I BECAME PREGNANT WITH MY 3RD CHILD. ELISHA WHICH IS NOW 6 AND RICHARD WHICH IS NOW 5. I HAD THEM VERY EARLY IN LIFE SO WHEN I GOT PREGNANT AGAIN I WAS ONLY 21. I HAD ALOT GOING ON IN MY LIFE, I HAD TO TAKE CARE OF MY CHILDRENS EMOTIONAL STATE AFTER THERE FATHER HAD LEFT THEM AND I ALSO HAD TO MAKE SURE THAT MY NEW HUSBAND UNDERSTOOD HOW THEY FELT.(MANY MOMS OUT THERE KNOW HOW THAT FEELS). IN MARCH OF 1998 I HAD MY FIRST ULTRASOUND. MY HUSBAND WAS ALL EXCITED BECAUSE IT WAS HIS FIRST BABY. WE WERE THERE FOR ABOUT AN HOUR WHEN THE TECHNICIAN DECIDED TO CALL A DOCTOR, AFTER SHE CAME IN DID THE ULTRASOUND HERSELF AND LEFT, SHE CAME AGAIN BUT THIS TIME WITH TWO MORE DOCTORS. ALL THESE PEOPLE LOOKING AT ME AND THE SCREEN AND LOOKING AT ME AGAIN WITH A SORRY LOOK ON THERE FACE, BUT NO-ONE HAD THE COURAGE TO TELL US WHATS GOING ON AND MY HUSBAND HAS NO PATIENCE FOR DOCTORS. AFTER HE ASKED SEVERAL TIMES WHATS GOING ON THEY DECIDED TO TELL US THAT WE WERE HAVING A BABY GIRL WITH WHAT LOOKS LIKE DUODANAL ATRESIA. BUT THEY NEGLECTED TO INFORM US THAT, THAT ONLY RUNS IN DOWNS CHILDREN. THEY ASKED US TO PERFORM A TRIPLE SCREEN TEST. SO THAT SAME DAY I GOT THE TEST DONE A WEEK LATER THE RESULTS WERE THAT WE WERE HAVING A HEALTHY BABY BOY. THE DOCTORS STILL WERE NOT SATISFIED SO THEY SENT ME FOR A LEVEL TWO ULTRASOUND WITH AN AMNIOCENTISES. SO ON MARCH 25, 1998. A REALLY NICE DOCTOR DID BOTH PROCEDURES AND EXPLAINED TO US WHAT EXACTLY THEY WERE LOOKING FOR. MY HUSBAND IS FROM INDIA AND DOWN SYNDROME IS NOT COMMON OVER THERE, SO WHEN THE DOCTOR SAID DS BABY HE HAD NO CLUE. HE THOUGHT SOMETHING WAS WRONG WITH HIMSELF. ON GOOD FRIDAY, JUST A COUPLE OF WEEKS LATTER THE RESULTS WERE IN AND AS EVERYONE THOUGHT I WAS HAVING A DOWN SYNDROME BABY BUT TO EVERYONE'S SURPRISE IT WAS A GIRL. I COULDN'T EXCEPT THE FACT THAT WAS ONLY 21 AND HAVING WHAT I THOUGHT A "RETARDED" BABY. BUT I WAS WRONG MONTHS WENT BY AND THEN WE FOUND OUT SHE HAD ENDOCARDIAL CUSHION DEFECT. BUT I STILL WOULD NOT GIVE UP THE PREGNANCY. MY OB-GYN TRIED SO HARD TO CHANGE MY MIND, TO A POINT WHERE THEY TOLD MY HUSBAND TO CONVINCE TO GIVE UP THE PREGNANCY. THEY ALL THOUGHT THAT I WAS JUST BEING A STUBBORN KID THAT DID NOT KNOW WHAT WAS GETTING INTO. BUT I DID NOT CARE AND NEITHER DID MY HUSBAND. I WAS INDUSED A MONTH EARLY BECAUSE MY BODY STARTED TO BREAK DOWN, I WAS TO BIG FOR WHAT APPEARED TO BE A SMALL BABY. I HAD THE MEASURMENTS OF A FULL TERM PREGNANCY WITH TWINS. MY BODY STOPPED FILTERING THE AMNIO WATER BUT KEPT PRODUCING IT. ON JULY 21, 1998 ARYANNA WAS BORN. BUT DURING BIRTH HER APPENDIX RUPTURED SO SHE WENT FOR IMMEDIATE SURGERY. ALL I COULD THINK ABOUT WAS A 5 POUND BABY GOING THROUGH A 9 HOURS OF SURGERY. WE WERE IN THE NICU FOR ABOUT 18 DAYS. SHE WAS SO COVERED WITH TUBES, WIRES, AND MONITORS THAT WE COULDN'T HARDLY SEE HER. AFTER WE GOT DISCHARGED FROM THE NICU WE HARDLY EVER SAW OUR OTHER TWO KIDS (THANK-GOD FOR GRANDMA) BECAUSE SHE GOT ADMITTED OVER 30 TIMES FROM AUGUST TO DECEMBER, FOR BREATHING PROBLEMS AND TURNING BLUE. ON THANKS GIVING DAY ARYANNA STOPPED BREATHING COMPLETELY AND WAS PUT ON A LIFE SUPPORT MACHINE. SHE WAS SENT TO BOSTON AND THERE SHE HAD HEART SURGERY WHICH SAVED HER LIFE SO NEEDLESS TO SAY THESE PAST TWO YEARS HAVE BEEN AN ADVENTURE BUT IT WAS ALL WORTH IT. ESPECIALLY WHEN SHE SMILES. SORRY FOR IT BEING SO LONG. FEEL FREE TO E-MAIL ME WITH QUESTIONS OR COMMENTS AT KFLOREST@AOL.COM
First of all, I would like to say how fun it is to read everone's stories. I think we are all going through similar circumstances, one way or the other! My husband and I have three children, Jordan age 8, Ashton age 4 and Carson, age 2. All girls. Ashton has down syndrome. The day Ashton was born was the most difficult day of our lives. I can almost remember every minute of the day. We had some minor problems during delivery and were very happy when the baby finally arrived. My husband and I felt that something was wrong, but we couldn't put our finger on it. The nurses took the baby away and didn't bring her back for quite some time. The doctor told me the next morning that they suspected the baby had down syndrome. I was alone at the time. I think you all know how I felt. I then called my husband. Words can not express how we felt. We didn't know one thing about down syndrome. To make a long story short, a bad story has a very good ending. Ashton is the light of our lives. She is 4 years old, only weighs 27 pounds and has hair longer than she is! She is adorable. We had another child after her, Carson. As you can imagine, making the decision to have another child was extremely difficult. We are so glad that we did. Ashton learns more from Carson than anyone else! Ashton currently goes to a preschool program at an elementary school. She rides the bus everyday and loves it! We have our challenges, but the rewards far outway the challenges. Our family feels very fortunate to have Ashton in our family. The love she brings to a room is unbelievable. I could talk about this subject forever! I am looking forward to hearing more from everyone!
Our story might be a little long but here goes. We lived our lives carefree with our beautiful 13 year old daughter whom was born healthy. On March 1998 I found out I was pregnant, I took one of those home test. Needless to say that I was shocked. I wasn,t planning to have any more children. That didn't mean that my husband didn't want one. I just kept putting it off. I was 32 years old. I started to visit a supposely very good Doctor. He took care of us during our pregnacy. During an ultrasound he informed us that I was having a baby boy. We were very happy. Everything was going fine till October 24th 1998. This was my baby shower. Mind you there were four other friends of mine that were having a baby at the same time. They were all there. They looked great. They all were "big". In other words they looked like they were having a baby. I didn't .My stomach was not growing I kept telling my Dr. about my concern's, the fact that I was not gaining any significant weight. His answer " hey your lucky cause your not going to have to loose much weight afterwards". I also noticed that my baby was not moving as much anymore. On October 24th 1998 after seeing all my "pregnant friends together I knew something was not right. On 0ctober 27th 1998 I went on a routine check-up and again informed him of my concerns. Then he had me have another ultrasound ( mind you everytime I went I would ask to get a "picture"). He must have seen something cause he sent me to the hospital for Fetal Monitoring. The technician asked me how many months I was, I told him 8. He then brought in all kinds of specialist. To inform me that my baby had stopped growing at about six months. I was sent for an immidiate C-section. It was shocking to know that the baby boy we were expecting turned out to be a beautiful 4 pounds 1 ounce baby GIRL. There was so much going on around us, that we assumed it was because of her low birth weight. We were told that she looked like a DS baby in the recovering room. It would have been easier to have been hit by a truck. I was devasted. My husband never said a word. Our daughter had to stay in the NICU for 11 days. For an infection brought upon the fact that I had little if no ambiotic fluid. During her stay in the NICU I was approched by many specilist. One of whom told us that she was a "MONGOLOID" and would eventually have to be put in an institution. That day after many tears and and desperate thoughts. My husband was GREAT, he kept saying God knows why he does things. If she does have D.S. We'll be strong enough. I couldn't understand where all this strengh was coming from. I kept asking God why her. I felt that I had commited so many sins in my life,why punish her for them. I kept going to the hospital chapel. And asking if not for a miracle then not to make it to hard. He anwered it. Our daughter was born with Translocation Down Syndrome. She doesn't have any of the complication that sometimes go along with D.S. We're very thankful to the big guy upstairs. We pray every day. We thank him for all his blessings especially for the special angel he put in our home and in our lifes. In the short time she's been with us she's taught us understanding, PATIENCE and the meaning of unconditional love. Who knows what tommorrow will bring. What we do know is that with love and faith anything is possible. Our new motto for our kids is "NOTHING IS IMPOSSIBLE, IT MIGHT JUST TAKE A LITTLE LONGER". A nurse(I like to call her an ANGEL) from the NICU gave us an advice that went straight to my heart and soul "DON'T LET ANYONE TELL YOU WHAT YOUR CHILD CAN AND CANNOT DO. THE ONLY LIMITS SHE WILL HAVE ARE THE ONES YOU PUT ON HER". Thanks for taking the time to read my story. Again sorry for it being so long!!!!!
" Marisa--God Makes no Mistakes" God sent a precious baby to our family one day, A blessed gift from Heaven We're thankful to say, We all fell in love with her from the start, God makes no mistakes She has a pure heart, Marisa is special and will have special needs, but with Gods help We know she'll succeed! God answers prayer and we pray everyday, God makes no mistakes, HE SENT HER OUR WAY. HAPPY !ST BIRTHDAY TO OUR DS ANGEL! Written by grandma.
I have a nephew that was born with down syndrome, he's 3 years old now and can speak a few words but what i know is that i love him. See down syndrome runs in the family, my oldest brother had down syndrome he was only 3 when he died I wanted to share that story and see how people react.
I am reading "your story" almost every day. Thanks to all of you for your stories. It helps me a lot to cop my stress because we have DS baby boy(3 m. old) too. I still do not want to exept that my son has DS, even I have seen the test result. Thanks God he does not have any health problems and he seems very normal like his two oldest brothers were at his age only his eyes are a little different. My husband and I have decided not to tell anybody about DS(wish is our big pain), we do not want to break their(relatievs) heards, like our doctors did for us. We decided to raise him as we planed(to raise "normal" child), but we are working hard doing every day routin(swiming, masage, exesise and others). We all love him very very much and he gets a lots of kisses all day long... And I do not have any regrets that I did not have that amniosentesis and did not killed our wonderfull child. In other hand, I blame myself that at my age I am the couse of my child's DS condition. But who knows??? Good luck to all and thanks for reading our story.
Hi my name is Maria What a wonderful site this is. I have not been able to take my self away from the computer. I do have a story too and I believe that it will fit into someones exsperience like all of these stories do. I have three children born very healthy. I had miscarried three times before all of them and thought that I would never have children. But lucky me I have been blessed with three instead. My first marriedge I had one girl who is 8 years old today and then a boy 6 years old. Two years ago I got married again. We were so much in love with our two children and then we thought that we could ad to it one more. I became pregnant. I was on medical thearapy and somehow I suddenly became very much afraid that it would hurt the child during the pregnancy. I also felt that I was not ready to bring another child for the reason at that time that financial situation told me that I would have to wait.I desided my self on my own that I could not carrie the child thinking that it would harm the child´s health. I went with a prayer in my heart for forgiveness when I went into the hospital to terminate the pregnancy. One year later I had finished to take these medicine and the financial problems became unexspectedly better. we desided to try again. and prayed to GOD that He would be able to let us Everything seemed ok until the 10th week of pregnancy and I had very heavy bleeding. I thought that this was my punishment for letting the pregnancy end. But when I went to ultrasound the nurse told me that she could see that there is two sacs inside and one is emty but the other is totally alife. I was relieved because my guilt had knocked on the door. I had very easy pregnancy and when I was 36.5 weeks pregnant I started to feel something happened. The delivery was fast and easy like a BOMB. I gave birth to a beatiful baby boy. Everything went fine and I could not see any shadow in my life that moment. Two days later the doctor came to me to tell me that he thought that the child could have DS. I came completely to the the earth like a alien. How can that be he is just like his father? He told me that he had to comfirm it with a test and that took long three days. I was ofcourse looking continuesly at my baby boy thinking how can the most beautiful boy in here have DS. Then when the results came back and confirmed this. I got tears in my eyes. I was thinking about my boy that so many people will not like him and I felt so sad for him. Then I hold him so tight and in his ear I whispered. Mom will take care of you. I was few 9 days in the hospital for the reason that my husbond was abroad and it would be better that he would be here when we will take the child home. At the time I was in the hospital I had alot of time to think. Once I met a woman who was waiting for her daughter who was newly a mom. She asked me if I was having a child there. Yes I do I said with a smile. And then I said he is very fine and doing great but he is DS. She became silent. Then she told me that she was once pregnant with child with DS and that she terminated the pregnancy for that reason. I thought about my cute boy and I felt so lucky that people who terminate the pregnancy for that reason could not see how gourgouse child has been terminated. I tought about my own mistakes before. and today I think that if we are not ready for a child with DS. then we should not be trying to have children beacause then I think that we are not at all ready for a child. I think that God has showen me more then enough that he forgives because he has given me three healthy children Maria (His name will be Aaron)
OUR SON CORY WAS BORN JULY 26TH 1995. THEY TOLD US IT WAS POSSIBLE THAT HE MAY HAVE DS. BUT WE HAD NO DEFINITE ANSWERS. I HAD NO TESTS DONE TO CONFIRM IT. AFTER HE WAS BORN THEY HAD TO BUT HIM IN THE NURSERY ON OXYGEN. AFTER ABOUT A HALF AN HOUR MY HUSBAND WAS GONE TO CALL FAMILY AND FRIENDS TO TELL THEM OUR GOOD NEWS WHEN THE DR POPPED IN AND SAID "MAAM YOUR SON HAS DS, HE ISNT MAKING ENOUGH OXYGEN AND WE ARE DETECTING A WHOLE IN HIS HEART. WE NEED TO FLY HIM OUT RIGHT AWAY TO HAVE HEART SURGERY" NEEDLESS TO SAY I WAS IN SHOCK. MORE CONCERNED ABOUT HIS HEALTH PROBLEMS THAN THE DS. AFTER HE WAS FLOWN OUT I WAITED PATIENTLY FOR MY HUSBANDS CALL (HE DROVE TO THE HOSPITAL WHERE THEY FLEW CORY TO) FINALLY 3 HRS LATER HE CALLED WITH GREAT NEWS. CORY WAS NOT GOING TO NEED SURGERY. HE HAD A COMMEN HOLE IN HIS HEART (PATENT DUCTUS ARTERIOUS) IT WOULD CLOSE ON ITS OWN. WELL WE SPENT 10 DAYS TOTAL AT THE HOSPITAL WITH HIM. HE WAS KEPT THERE FOR ONLY MINOR REASONS HE WAS A LITTLE JAUNDISE AND HE WAS NOT PRODUCEING ENOUGH PLATLETS. I CAN ACTUALLY SAY I ACCEPTED HIS DS RIGHT AWAY. I KNEW GOD GAVE THIS BABY TO ME FOR A REASON AND ALL I CARED ABOUT IS HOW I COULD BE THE BEST MOTHER TO HIM AS I COULD BE. MY HUSBAND HELD ON THE POSSIBILTIES UNTIL THE TEST RESULTS CAME IN. BUT OVER ALL HE ACCEPTED HIM RIGHT AWAY ALSO. HE IS A GREAT DADDY AND NEITHER OF US TREAT HIM ANY DIFFERENT THAN WE DO OUR 2 YEAR OLD DAUGHTER EMILY. CORY HAS BEEN A WONDERFUL EXPERIENCE FOR US AND BOTH OF OUR FAMILIES. HE HAS MADE ALL OF US LOOK AT LIFE ALOT DIFFERENTLY. EVERY ONE I KNOW EXCEPTS HIM EXCEPTIONALLY WELL. WE ARE VERY FORTANATE, WE LIVE IN A VERY SMALL COMMUNITY AND OUR SCHOOL SYSTEM HAS ALOT OF DEVELOPMENTALLY DISABLED CHILDREN IN IT, SO THEY ARE ACCEPTED VERY WELL. CORY STARTED PRESCHOOL WHEN HE WAS 3 AND HE LOVES IT. HE IS VERY VERY HEALTHY. HIS HEART IS FINE. HE HAS ABSOLUTLEY NO MAJOR MEDICAL PROBLEMS. HIS WORST PROBLEM IS HE HAS TO HAVE TUBES IN HIS EARS. BIG DEAL I THINK. HE HAS ALOT OF COLDS BUT THAT CAN BE DEALT WITH EASILY ALSO. WE HAVE BEEN VERY LUCKY. HIS SPEECH IS VERY SLOW BUT HE TRYS VERY HARD TO COMMUNICATE THE BEST WAY HE KNOWS HOW. TO BE VERY FORWARD, HE NEVER SHUTS UP. HAHHAHA OUR BIGGEST AND MOST DIFFICULT MILESTONE RIGHT NOW IS POTTY TRAINING. WE ARE ALL GETTING VERY FRUSTRATED BUT ARE TRYING TO BE PATIENT. BUT THE BOTTOM LINE IS, CORY IS THE LIGHT OF OUR LIVES AND I CAN'T IMAGINE WHAT LIFE WOULD BE LIKE WITHOUT HIM. HE KEEPS US ON OUR TOES AND WE ARE NEVER BORED WHEN HE'S AROUND, THATS FOR SURE.
ON DECEMBER 3 1998 MY HUSBAND AND I HAD OUR FIRST CHILD ONE MONTH PREMATURE. FOLLOWING A DIFFICULT BUT FAIRLY NORMAL PREGNANCY.I REMEMBER THE DAY WHEN WE HAD OUR BEAUTIFUL 15 MONTH OLD SON AUSTIN, LIKE IT WAS JUST YESTERDAY. WE EXCPECTED THEIR TO BE SOME PROBLEMS DUE TO THE PREMATURITY, BUT THINGS TURNED OUT MUCH DIFFERENTLY THAN WE EXCPECTED, AUSTIN LOOKED LIFELESS AND LIMP AND BLUE, I REMEMBER HEARING THE NURSES WHISPER I KEPT ASKING MY MOM WHAT WAS GOING ON . I NO SOONER CAUGHT MY BREATH WHEN FAMILY MEMBERS STARTED FLOODING IN, THE NURSE THEN PLACED OUR SON IN MY ARMS AND ANNOUNCED IN FRONT OF EVERYONE THAT OUR CHILD HAD DOWN SYNDROME.
WE HAD NO IDEA AHEAD OF TIME, NOR DID WE KNOW ANYTHING ABOUT DOWN SYNDROME. THAT MOMENT WAS THE HARDEST MOMENT OF OUR ENTIRE LIVES. FOR THE NEXT COUPLE DAYS ADRENILINE KEPT ME GOING EXPLAINING TO FAMILY MEMBERS ABOUT A CONDIDTION I KNEW VERY LITTLE ABOUT, AND THE LITTLE I DID KNOW CAME FROM VARIOUS NURSES THAT HAD PRECONCIEVED IDEAS OF WHAT DOWN SYNDROME PEOPLE COULD ACCOMPLISH AND ACHIEVE . A FEW DAYS LATER WHEN THE VISITORS HAD GONE, REALITY SET IN AND I WAS CRUSHED I EVEN FELT AT ONE POINT THAT IT WASNT FAIR,AND THAT I WAS BEING PUNISHED. THEN A STATE OF DENIAL RUSHED OVER ME THINKING THAT THEY WERE WRONG AND I WAS ANGRY. ANGRY AT MYSELF, MY HUSBAND,THE STAFF AND GOD,ALTHOUGH I KNEW DEEP IN MY HEART THAT THE STAFF WAS EXPERIENCED AND THEY KNEW WHAT THEY WERE TALKING ABOUT.
WE AWAITED THE RESULTS OF THE CHROMOSOME TESTING TRYING TO BE PATIENT,WAITING PUT A TREMENDOUS STRAIN BETWEEN MY HUSBAND AND MYSELF SO MUCH THAT YOU COULD FEEL THE TENSION IN THE AIR BECAUSE NOW THAT WE HAD MADE IT THROURGH THE DENIAL STAGE FAMILY MEMBERS WERE STARTING TO GO THROUGH IT.ONCE THE CHROMOSOME TESTS CAME BACK IT WAS A BIG RELIEF NOT BECAUSE THEY WERE WRONG, THEY WERE RIGHT. BUT NOW WE NEW THAT WE HAD TO EXCEPT HIM AND MOVE ON CHERRISHING EVERY MOMENT THAT WE HAVE WITH OUR GIFT OF AN ANGEL SENT TO US ESPECIALLY FROM GOD NOT BECAUSE HE WAS PUNISHING US BUT THAT HE CHOOSE US BECAUSE HE TRUSTED AND KNEW THAT WE COULD HANDLE IT. IT TAKEN US AWHILE TO LEARN THAT SOMTIMES THINGS THAT ARE BEYOND OUR CONTROL HAPPEN ,WE AREN'T ALWAYS GIVEN A REASON WHY THAT WAS OUR BIGGEST BATTLE. ONCE WE HAD REALIZED THIS WE FELL IN LOVE WITH OUR SON CHERISHING EVERY MOMENT (EVEN THE CRANKY ONES), WE CELEBRATE EVERY MILESTONE AS IF IT WAS HIS FIRST, AND SOME WOULD SAY THAT MR.AUSTIN MAY BE A LITTLE SPOILED BUT MY HUSBAND AND I DONT BELIEVE THAT A BABY CAN BE SPOILED HE GETS LOTS OF LOVE AND KISSES EVERYDAY HOW CAN THAT BE SPOILING, BECAUSE SEEING HIM SMILE WHEN WE GIVE HIM LOVE COULD BRIGHTEN ANYONES DAY. WE HAVE LEARNED ALOT THROUGHT THIS JOURNEY,BUT THE MAIN THINGS ARE THAT YOU SHOULD NEVER PUT LIMITS ON YOUR CHILD,AND THAT RAISING A CHILD WITH DOWN SYNDROME IS NOT EASY BUT NEITHER IS RAISING A TYPICALLY DEVELOPING CHILD,AND MOST IMPORTANT THAT A CHILD WITH DOWN SYNDROME MAY NOT DO THINGS AS EARLY OR AS EASILY AS ANOTHER CHILD BUT THEY WILL SUCCEED AT MOST EVERYTHING WITH A LITTLE PATIECNE AND LOVE.
Well - Here goes..I am the Mother of a 7 1/2 yr old beautiful daughter, Dani, with DS. She was born on 7/18/92!! I, like alot of you, did NOT know I was having a baby with DS until the day she was born...It was more a shock for my husband then for myself. I just remember asking, "OK - Teach me how to be the BEST Mother to this special gift that God has given to me"....My daughter is in a spec ed class within a regular, elementary school. It just so happens that tomorrow is her annual review...Dani is having major behavorial problems and we just recently agreed to medication to assist her with these problems. I am also going to be receiving Residential Habilitation Services through the County in which I live. These service includes teaching our daughter daily living skills as well as time out in the community to learn appropriate behavior in the environment, etc. My husband and I have chosen to live her because that have such a wide range and diversified amount of services available for special kids....It hasn't been easy and esp. lately. I, also, have a wonderful support network of my family and friends and don't know what I would do w/o them!! It has been a challenge but when my daughter says I FUH YOU MOMMY (I love you Mommy) or "BIG HUG Mommy" I know that she will be fine...It was really nice to read all of the messages and to know that I am not alone....I was really down today about Dani (anticipating the outcome of the annual review tomorrow which is NOT always easy or pleasant) BUT I am a tough Mom and am doing everything in my power for my daughter. It amazes me though that even for parents like us, we still have to fight for our child's rights to make sure that she (or he) is taken care of while out of our homes. My daughter is also very high functioning BUT with the behavioral problems lately, this is effecting her ability to learn more....I have been thinking (my husband, too who is great guy and Dad) that maybe Dani isn't quite ready for a public school. I wish the early intervention program my daughter attended ( she actually went on a bus at 1 and 1/2 years old and LOVED IT!!) continued after pre-school...She started kindergarten at a public school when she was 5 and I still think (she's in 2nd grade now) that she just isn't ready YET....It has been a long haul and I am still fighting to get the best placement for her. Anyway, I will keep you all informed on how things are going - I really love my daughter and cannot imagine life without her....I also have an (almost) 20 month old (she'll be 20 mos old on the 16th this month) Dani loves her baby sister, Cali and Cali really loves Dani, too.... Thanks for listening and feel free to email me...It was great reading all of your stories and I wish you all well and peace....It is true, "God only gives us what we can handle" Robbin to make sure that my daughter is in the
Well - Here goes..I am the Mother of a 7 1/2 yr old beautiful daughter, Dani, with DS. She was born on 7/18/92!! I, like alot of you, did NOT know I was having a baby with DS until the day she was born...It was more a shock for my husband then for myself. I just remember asking, "OK - Teach me how to be the BEST Mother to this special gift that God has given to me"....My daughter is in a spec ed class within a regular, elementary school. It just so happens that tomorrow is her annual review...Dani is having major behavorial problems and we just recently agreed to medication to assist her with these problems. I am also going to be receiving Residential Habilitation Services through the County in which I live. These service includes teaching our daughter daily living skills as well as time out in the community to learn appropriate behavior in the environment, etc. My husband and I have chosen to live her because that have such a wide range and diversified amount of services available for special kids....It hasn't been easy and esp. lately. I, also, have a wonderful support network of my family and friends and don't know what I would do w/o them!! It has been a challenge but when my daughter says I FUH YOU MOMMY (I love you Mommy) or "BIG HUG Mommy" I know that she will be fine...It was really nice to read all of the messages and to know that I am not alone....I was really down today about Dani (anticipating the outcome of the annual review tomorrow which is NOT always easy or pleasant) BUT I am a tough Mom and am doing everything in my power for my daughter. It amazes me though that even for parents like us, we still have to fight for our child's rights to make sure that she (or he) is taken care of while out of our homes. My daughter is also very high functioning BUT with the behavioral problems lately, this is effecting her ability to learn more....I have been thinking (my husband, too who is great guy and Dad) that maybe Dani isn't quite ready for a public school. I wish the early intervention program my daughter attended ( she actually went on a bus at 1 and 1/2 years old and LOVED IT!!) continued after pre-school...She started kindergarten at a public school when she was 5 and I still think (she's in 2nd grade now) that she just isn't ready YET....It has been a long haul and I am still fighting to get the best placement for her. Anyway, I will keep you all informed on how things are going - I really love my daughter and cannot imagine life without her....I also have an (almost) 20 month old (she'll be 20 mos old on the 16th this month) Dani loves her baby sister, Cali and Cali really loves Dani, too.... Thanks for listening and feel free to email me...It was great reading all of your stories and I wish you all well and peace....It is true, "God only gives us what we can handle" Robbin to make sure that my daughter is in the
Well - Here goes..I am the Mother of a 7 1/2 yr old beautiful daughter, Dani, with DS. She was born on 7/18/92!! I, like alot of you, did NOT know I was having a baby with DS until the day she was born...It was more a shock for my husband then for myself. I just remember asking, "OK - Teach me how to be the BEST Mother to this special gift that God has given to me"....My daughter is in a spec ed class within a regular, elementary school. It just so happens that tomorrow is her annual review...Dani is having major behavorial problems and we just recently agreed to medication to assist her with these problems. I am also going to be receiving Residential Habilitation Services through the County in which I live. These service includes teaching our daughter daily living skills as well as time out in the community to learn appropriate behavior in the environment, etc. My husband and I have chosen to live her because that have such a wide range and diversified amount of services available for special kids....It hasn't been easy and esp. lately. I, also, have a wonderful support network of my family and friends and don't know what I would do w/o them!! It has been a challenge but when my daughter says I FUH YOU MOMMY (I love you Mommy) or "BIG HUG Mommy" I know that she will be fine...It was really nice to read all of the messages and to know that I am not alone....I was really down today about Dani (anticipating the outcome of the annual review tomorrow which is NOT always easy or pleasant) BUT I am a tough Mom and am doing everything in my power for my daughter. It amazes me though that even for parents like us, we still have to fight for our child's rights to make sure that she (or he) is taken care of while out of our homes. My daughter is also very high functioning BUT with the behavioral problems lately, this is effecting her ability to learn more....I have been thinking (my husband, too who is great guy and Dad) that maybe Dani isn't quite ready for a public school. I wish the early intervention program my daughter attended ( she actually went on a bus at 1 and 1/2 years old and LOVED IT!!) continued after pre-school...She started kindergarten at a public school when she was 5 and I still think (she's in 2nd grade now) that she just isn't ready YET....It has been a long haul and I am still fighting to get the best placement for her. Anyway, I will keep you all informed on how things are going - I really love my daughter and cannot imagine life without her....I also have an (almost) 20 month old (she'll be 20 mos old on the 16th this month) Dani loves her baby sister, Cali and Cali really loves Dani, too.... Thanks for listening and feel free to email me...It was great reading all of your stories and I wish you all well and peace....It is true, "God only gives us what we can handle" Robbin to make sure that my daughter is in the
Hi my name is laura and before my experance of metting some one with Down Syndrome I thought they were weired and strange. But now that I know some one personaly it changed it dromadicaly. They are just as normal as you and i.
hi my name is patti and i have a daughter, hannah, with down syndrome. hannah was born mar. 27 1996 on a bright sunny day. my husband brian and i didn't know that hannah had downs until she was born. we were quite surprised. i had a triple screen test done at 16 weeks and it came back positive for downs. i then had an ultrasound but it came up negative. at the time i was working at my ob/gyn group practice as a med tech, so i occasionally popped into the ultrasound department for quick peeks at hannah. still no sign of downs. there were also no signs of any heart problems which we were thankful for. my first thoughts when hannah was born was that she would never be a functional member of society. i was very sad. today, however, hannah (almost 4 years old) is a happy and fun-loving big sister to her two younger brothers lucas (22 mos) and nicholas (8 mos). hannah attends pre-school at our local easter seals. she's doing very well there and everyone loves her. i was very fortunate to be linked to some wonderful people at the early intervention program in our area and i attribute hannah's success so far to all the help her therapists provided. i'd be happy to correspond with anyone who has a child around 4 years of age.
My story is 19 years long..we had a great start when Emily was born at Fitzsimmons Army Hospital in Denver in 1980...the last of 4 children. She had heart problems and Hirsphrung's disease. the heart problems spontaneously corrected and a day of abdominal surgery at 18 months with no problems. I received excellent advocacy training when she was 2 yrs so we had a very inclusive education with minimal hassle. Unfortunately our community is somewhat uneducated in advocacy so it was a lonely trip with all her really good friends in segregated resource settings...thank God for Special Olympics or she might never have had good friends...merely aquaintences in traditional classes. Looking back on it, I'm not sure I would do it the same way again. I feel she had a lot of normal social exposure and experienced a lot of growth in this area but I feel we sacrificed a lot in the way of academic growth. Despite what all the advocacy gurus say, there are some things that are just easier for a child with DS to learn in an adapted one to one setting. Sometimes I have to admit I felt like it was all an elaborate game with me as the chief puppetier. Did anyone see The Truman Show????????? Anyway to make a long story shorter, we khave loved raising Emily...certainly more laughter than tears...like the time at 16yrs when I started to clean under her bed and found 12 EMPTY beer cans....and 8 Barbie and Kens! Right now we are involved in something that some of you might find interesting....Emily is currently attending Eastern New Mexico University in Rowsell. She is in a Special Services program and lives with 60 disabled students and just about as many non disabled students in a campus dorm. A variety of vocation program options exist. The students spend at least 4 hours a day working in a practicum setting. Em started out in the certified nursing program in a nursing home setting, but dropped this after she called home one night and said "there's something I really don't like about nursing....naked old people!" She tried child care and is now where SHE really wanted to be in the first place...food service. She has many new friends and comes and goes as she pleases having learned to ride the city bus. It took 200 miles between us to finally start cutting those apron strings. When we visit her I have to resist the urge to tell her she should curl her hair or put on makeup. She's been chastised more than once for spending too much time at the Mall (yes!) and for playing her music too loud and too late. Sounds just like the college freshmen I remember. Emily is truly happy and so are we. She has even taken the greyhound bus home to Amarillo several times successfully so we don't have to make that very boring drive so often. I am new to the computer so this site is also new to me. I notice most letters are from parents of fairly young children. You have so many wonderful adventures ahead of you....good luck and contact me for moral support if you ever need it. My email address is grannyjj@hotmail.com (I sit on several boards around the state and am embarrassed to give this out to people, but noone in my busy family has time to help me open a different account...this one sounds like I'm in training for the Indy.)
I AM A GRANDMOTHER AND ONE OF MY BEAUTIFUL GRANDCHILDREN HAS DOWNS. SHE IS SO BEAUTIFUL AND SWEET. I THINK ALL CHILDREN ARE BEAUTIFUL THROUGH. HER NAME IS BROOKE AND SHE HAS THREE PRETTY SISTERS. HER FATHER IS STUDYING TO BE A MINISTER. SHE IS ONE OF SEVEN GRANDCHILDREN AND THE APPLE OF MY EYE. IHAVE TWO CHILDREN THAT ARE BORDERLINE RETARDED. AND HAVE GRADUATED FROM HIGH SCHOOL. I DID'T KNOW TO MUCH ABOUT DOWNS. I WISH TO THANK ALL YOU WONDERFUL MOTHER AND FAMILY MEMBERS FOR LETTING ME KNOW ABOUT DOWNS. NOW AFTER LEARNING WHAT I HAVE, EACH TIME I SEW ANOTHER PRETTY DRESS FOR HER I WILL THINK ABOUT ALL THE THINGS I HAVE LEARNED ANDWILL LOVE HER MORE IF POSSIBLE. THANK YOU AGAIN. BOOKES. MIMI
Some of you may of read about Abbey a year ago from her Aunt Colleen in KCMO. Abbey was born February 21, 1999. She was born three weeks early and weighed 8 lbs. We moved from Missouri during my wifes 7th month of pregnancy not knowing the challanges that laid ahead. About fifteen minutes after Abbey was born the pediatrition informed us that Abbey showed characteristics of DS. Chris and myself were devastated and did not want to beleive what the doctor had told us. Two days later the genetics test confirmed that she indeed had DS. Abbey was also diagnosed with an Atrial Septal defect which was repaired on December 07, 1999. Her Aunt found this website soon after she was born and told us all about it. At first Chris and I had a hard time dealing with the fact that our child had DS. We kind of went through a greiving and denial phase. We did not want to accept that our beautiful little girl had any problems. We love her very much and want to do everything we can for her. Abbey has beautiful red hair and big blue eyes and every time she smiles she brightens the room. She has a five year old brother Alex that loves her very much. Alex keeps Abbey active and motivated and laughing all the time. We are trying to move back to Missouri to be closer to our family and freinds. Wondering if anyone from KCMO knows of the services, EI programs or doctors that specialize in DS in KCMO. Colorado's EI programs has been extremely helpful. Abbey is in PT, OT and attends an infant class once a week. Love to hear from anyone with any info.
Hi, On Feb.14, 2000. I gave birth to triplets. My number 7,8 & 9. I delivered at 32 weeks after spending 6 weeks in the hospital. A few hours after birth, my husband told me that genetic tests had been ordered on two of our boys. One of the two had AV canal. Our first some Michael was perfectly fine. However our second son Paul and our third son Alex appeared to be identical and had markers for Down Syndrome. My husband of almost 2 years and I took it fairly well. In July of '98 we had gone through an amnio on our first child and all was well, but we had considered our options and feelings regarding Down's at that time. On Friday, we had confirmation that Down's was now a part of our life. We are trying to learn what we can and look forward to talking to others learning too. I will keep you all posted and good luck to all. Sandra and Thierry
Our beautiful son came into the world Nov.20,1996 weighing 4lbs. 8 ozs. We did not know he had down syndrome before he was born.So we were shocked like most.We went through denial at first like most and had to deal with our over flowing emotions of how this could be.But never once did I love him any less it just made me more determined to help live his life to the fullest! And thats what we are doing.He will get the same opportunites are other child do.Ryan is doing well in every aspect of his life.He is 3 years old and such a blessing in our home his warm hugs and kisses are the best .He is now in preschool 4 days a week and he is doing exceptional.I would be happy to correspond with other parents.Please email me.
Ya'at'teeh (means Hello). I am a Native American and my tribe is Navajo. I am a mother of a little girl who is downs and she is 15 months old. I have a little boy who is 4 years old. Very happly married.I had my baby girl by natural delivery without any medication. My baby was born at 38 weeks due to that I had high blood pressure and it would not go down. I was induced labor and went into labor for four hours and I had my baby girl. I was very devastated when my pediatrician told she may have downs and she was tested and the test results came back positive. It was tuff going for 2 weeks after I delivered my baby girl. She went through alot of health problems like her sugar was very low, her blood was very thick and she had atrial septecal defect of the heart. But she progress on, all these things corrected itself. Her heart had a hole and may have required heart surgery if it did not corrected itself by age 2. Her heart closed off by itself and I was relieved.
As a Native American, we believe and accept all things that come our way. We take of our family and our extended family believe that what the outcome is it did not matter. What matters is taking care of our little girl and she is our baby, too. I was depressed and cried alot. But I have overcome the situation and it is not a problem. But pure joy for my family and my extended family. I give all my thanks to my traditional aunt and my husband's grandfather (a medicine man) who told me she will be fine and do not listen to what they say to you. We had a prayer and blessing done on my daughter. If it was not for the two people. I would not know what I would be like today. I thank them alot and I help them out alot to this day. Because their belief is very strong. We as Native Americans help one another and keep the family together and that means the extended family stays together. My whole family and extended family accepts my daughter and love her very much in their own little way.
My immediate family loves my daughter very much. She is such a joy and when we are stress, we look to her and she gives us that great big smile and the great big smile we see in her eyes. Her brother is the person that brings out the best in her. I thank my son for being there and keeping her sister active. If it was not for her brother. I do not know where she would be at.
I thank my family and extended family for all the support and to believe in myself again and that my daughter will excel in all areas. I pray to my creator for what he has brought me and that is my daughter and the joy that she brought to all of us.
I would like to leave you a saying from my tribe that I will hold dear to and what keeps me going forever.
We are the Holy People of the Earth. We are created and placed between our Mother Earth and Father Sky. Our Home, the Four Scared Mountains, with the entrance to the East, emodies our Way of Life. It provides strength and peace within us. Spirituality, intellect, planning, and life have been instilled within us; through these attributes we attain knowledge and wisdom. We shall combine the best learning and knowledge of other societies with that of our own for the benefit of our future. With that, our childre will walk with beauty before them, beauty beneath them, beauty above them, beauty around them, and will always be respectful and live in harmony with natural law. Our children will go forth in life endowed with what is required to achieve their ultimate aspirations.
With that, "May you walk in beauty and beauty is in the eye of the beholder". Thank you for allowing me to tell you about my story.
Ya'at'teeh (means Hello). I am a Native American and my tribe is Navajo. I am a mother of a little girl who is downs and she is 15 months old. I have a little boy who is 4 years old.I had my baby girl by natural delivery without any medication. My baby was born at 38 weeks due to that I had high blood pressure and it would not go down. I was induce labor and went into labor for four hours and I had my baby girl. I was very devastated when my pediatrician told she may have downs and she was tested and the test resulted came back positive. It was tuff going for 2 weeks after I delivered my baby girl. She went through alot of health problems like ber sugar was very low, her blood was very thick and she had atrial sepect defect of the heart. But she progress on, all these things corrected itself. Her heart had a hole and may have required heart surgery if it did not correct itself by age 2. Her heart has closed itself and I was relieved.
As a Native American, we believe and accept all things that come our way. We take of our family and our extended family no matter what the outcome is. I was depressed and cried alot. But I have overcome the situation and it is not a problem. But pure joy for my family and my extended family. I give all my thanks to my traditional aunt and my husband's grandfather (a medicine man) who told me she will be fine and do not listen to what they say to you. We had a prayer and blessing done on my daughter. If it was not for the two people. I would not know how I would be today. I thank them alot and help them out alot. We as Native Americans help one another and keep the family together and that means the extended family stays together. My whole accepts my daughter and love her very much in their own little way.
My immediate family love my daughter very much. She is such a joy and when we are stress, we look to her and she gives us that great big smile and the great big smile we see in her eyes. Her brother is the person that brings out the best in her. I thank my son for being there and keeping her sister active. If it was not for her brother. I do not know where she would be at.
I thank my family and extended for all the support and to believe in myself again and that my daughter will excel in all areas. I pray to my creator for what he has brought me and that is my daughter and the joy that has brought to all of us.
I would like to leave you a saying from by tribe that I will hold dear to and what keeps me going forever.
We are the Holy People of the Earth. We are created and placed between our Mother Earth and Father Sky. Our Home, the Four Scared Mountains, with the entrance to the East, emodies our Way of Life. It provides strenteh and peace within us. Spieituality, intellect, planning, and life have been instilled within us; through these attributes we attain knowledge and wisdom. We shall combine the best learning and knowledge of other societies with that of our own for the benefit of our future. With that. our childre wil walk with beauty before them, beauty beneath them, beauty above them, beauty around them, and will always be respectful an dlive in harmony with natural law. Our children will go forht in life endowed with what is required to achieve their ultimate aspirations.
With that, "May you walk in beauty and beauty is in the eye of the beholder". Thank you for allowing me to tell you about my story.
I grew up with a wonderful brother named Jamie. Jamie had DS. He was the most loving, beautiful and sweet person i have ever known in my life time. jamie and i grew up in a home with severe abuse. so, needless to say, i took care of him and protected him. he was truely my baby and my angel. Jamie passed away on Oct, 09, 1999. he was 36 years old. he always had good health until April of 99. Jamie began having trouble urinating. then he couldn't eat and had difficulity walking. jamie was in and out of the hospital serveral times. he had several cat scans and mri's. none of the doctors could figure out what was going on with our special boy. after several months of getting the run around jamie was sent to a neurologist in oklahoma city. by this time jamie's condition worsened. he got where couldn't breathe and was put on a ventilator. after jamie almost passed away in september he was life-flighted to mercy hospital in okc. the nuerologist sent jamie thru yet another mri. he was finally diagnosed with als. this is a very common neck disorder in DS people that is widely over-looked. it very seldom be picked up on an ordinary x-ray and also over-looked on mri's. the muscles in the back of the neck will flex in and out of the bones in the upper part of the neck. this results in a wearing down of the bones in the back of the neck. since this condition known as als is hard to detect, as in jamie's case the results can be death. we didn't discover this condition in jamie until it was too late. jamie under went surgery to put metal pins thru the bones in the back of the neck. the surgery was successful, but, by this time jamie had so much nerve damage that he could never breathe on his own. after much pain and suffering, we decided to take jamie off the ventilator on Oct. 7, 1999. he passed away 4 hrs. later. the reason i'm writing about this is let every parent that has a child with DS know about als. if you take your child in for yearly or bi-yearly check ups, please, please ask your doctor for an mri. ordinary x-rays will not pick up this condition. if it is caught in the early years, it can be repaired with minimal problems and recovery time. since the muscles contract in and out, you could take your child for an x-ray 1 week and everything will appear normal and the next week the muscles could be out away from the bone. a hard hit to the head or neck could cause paralysis/and/or death. also hard falls or a sudden jerk to neck are could cause similar results. i'm not trying to scare or upset anyone, i just want parents to be aware of this condition. alot of doctors DO NOT a regular check for this. never take word of a doctor or anyone that this is a rare condition or that you shouldn't worry about this. get it checked out frequently. some of the side effects of als is:lack of appetite, difficulity in walking, shallow breathing or difficult in breathing,nerve damage in upper and lower extremeties, possible internal organ deteroation- such as gall bladder problems or kidney problems. Jamie's neurologist told us if Jamie's doctor and checked for this at every physical, Jamie could have been saved. but, at his age, we only had a slim chance of Jamie ever being able to walk again after the surgery. but, as it was jamie's nerve damage was so severe that he could not breathe on his own. so we let him go. that was the hardest thing i have ever ben through in my life. i still grieve for him every day. i still can't believe i'll never see or touch my special by again. everyone says he's in a better place, and i know he is, but, that doesn't help me feel any better about losing him. i will never feel better about that. so, any parent that has lost their special child, i will say - yes he/she is in a better place than this earth but, i know you'll miss him because he was a part of your family and your life. you'll always remember things about them and yourheart ache to have that precious time back. it is not an easy journey you will have to walk. it's okay to feel these things. it's normal to feel like that even when everyone else says "it's time to get on with your life he's/she's better off" . feel what you need to feel for as long as you need to feel it and remember what a precious gift you had even if it was just for a while. I hope this helps someone and wasn't too long of a story.
Hello, I'm a new mom of beautiful twin boys, Alexander & Chase. I just purchased my computer yesterday so this is very new to me. Alexander was born with DS, Chase was not. I never planned on having any more children. I have a 22 year old son also. These were definately OOPS babies! How my life has changed. I don't have very much time to stop and worry about Alex being a little different. He is just wonderful. He seems to want a whole lot more attention than Chase. I have so many questions and would love to share some ideas. The babies are 5 months old now, they are really getting fun. Everyone says that Alex is spoiled and Chase is not. I wonder about discipline with a DS child. I know it's important.. I wonder if there is anyone else that has twins, one with DS and one without? It's a new experience everyday. I love them both so much, When iii'm real stressed and tired just from the everday stuff of raining twins. Alex will just look at me in his on little way, I just pick him up and hold him a few minutes and it all the stress just fades away. It's amazing how a DS baby can make you understand things in life you never could quite fiqure out before. Thanks for your time to listen, Mona Lisa
Lia Tarbox was born 12-31-98, one week early and only 6lb 2oz but healthy. The doctor told me the next day that she showed signs of down syndrome but that he wasn't positive so he wanted to do the chromosone studies. We were, as you all know, devastated and in shock and grieving. We went through another round of the same when the test came back as trisomy 21, as some people (my husband) were trying to convince me she didn't have it. It it was hard for me because my only experience with someone with ds was not good. I worked at a state hospital with what they called then "profoundly retarded" people . The one ds person I had to take care of had been raised in an institution and was not affectionate. All I could think of with Lia having it was that she wouldn't love us or want to be touched or hugged. How dumb I was! Lia is the sweetest most affectionate, loving baby God ever made. Everything she does is so wonderful because-I think- we expected so little when we were told about the ds. She is almost 14 months old and spoiled rotten by everyone. When she smiles, her whole face lights up. All it takes for her to smile is to look at her. She smiles in her sleep when I talk to her. One of my goals in life is to educate the public about her. We feel that there is nothing wrong with her, she is just different. And of all the corny things people say to you when you have a baby- They are a special blessing is the most true. But definitly not in line when parents are new to this. My dad's wife screamed when she heard the news and said" You're not going to keep her, are you?" My 2 very best friend just said congratulations, she's beautiful and she looks like you. That's why they are my best friends. Some people at work feel sorry for me and think she is a burden. I have to smile because they just don't know much. I thank God everyday she is healthy and such a wonderful,loving and happy girl.
Well I thought it was about time I really introduced myself to you all, I've been putting it off for so long because all of your stories are so beautifly written, I knew I coundn't do that good of a job. But now that I've been here for awhile I feel you all will overlook my mistakes.So here goes my name is Brenda and I have 4 beutiful kid,Desiree" 21,Matt 13, Austin 10 and last but definetly not least Billy 5 DS. One Wonderful Hubby Bill.Bill and I meet in 88 and married in 89.We both had children from previous marriages,Desiree lived with us and Matt with his Mom ,But we had him in the summer.I was told after Desiree was born that I couldn't have anymore Kids so we thought we were through,In Jan,94 I got real sick and it just wouldn't go away so I went to the Docs and low and behold he said I was pregnant,I made them take 3 tests before I would finally beleive them.And sure enough my miracle baby was due Oct 29th. Because of my age 34 at the time they wanted to do all the tests to make sure everything was ok and did, except for the amnio, I didn't want to risk that and told the Doctor it didn't matter anyway.Then Sept3 of 94 Matts mom decided she didn't want to be a mom anymore and was sending Matt and her other son to a orphanage for a few mnths,We just happen to call and find out,And went to get Matt and also took Austin her other son,So I became the proud mother of 2 new boy's,On Sept. 27th The baby didn't move all day the same on the 28th I called my Doctor and he said he was probale just resting,There were no other problems. Well about 1 oclock in the morning I had done everthing I could do to get the baby to move and couldn't take it any more so told Bill, I was going to go to the hospital something was wrong i felt it. When I got there they hooked me up to the monitors, and the Baby's heart beat was really low so they called the Doc and did ultra sounds, I called mom to watch the boys and Bill got there about 6,They said they better go ahead and take him because of the heart rate ,I was really scared.But he was born at 8:45 , I'll never forget those Big Blue eyes,an angels eyes, And that feeling that something still wasen't right. Well they took him away and mom and Desiree came in and looked so funny not happy you know like they should be but wouldn't tell us anything, I found out later that a nurse in the nursery had told them that they suspected DS.When they took me back to my room the Doctor came in and told us what they suspected and why and left.Well this harder than I thought, Ive never tried to put it in words and don't know that I can, the heartach that came yes for myself and for my child, Well I'm sorry it seems I can't. Been setting her for 5 minutes crying guess I should have done this long ago, So I'll just say he's a very heathy ,happy and smart boy. All my Boys are now. Theve brought more to my life than I ever thought possible didn't even know anything was missing. Brenda
One of my favorite memories is when my little girl, Ashleigh, was 3. She was the flower girl in her Aunt Amy's wedding. She could be a little ornery child...always curious and getting into mischief! Wellllll, it was an outdoor wedding in June. Picture rehearsal the day before, about 90 degrees. Picture my little varmint running everywhere but down the aisle, such as it was. Picture my nightmares that night of little Ashleigh setting the wedding on its ear. Come the wedding day, we got her all dressed up in her hand sewn flowergirl dress with her first pair of pantyhose and her basket of flowers. Instant change! I made all these alternative plans in case she misbehaved...didn't need any of them. She knew this was the real thing and she was absolutely perfect and beautiful. The pictures are priceless! Funny...her Aunt Amy was the flower girl in my wedding to her brother at age 3.... As most of you know, Ashleigh died in 1994 at age 6. But I have the most wonderful memories in the world. Many of you want me to tell the whole story, and I will, but I think I can only do it in "chapters." So stay tuned. Even though she's gone, people with DS still touch my heart in a deep way. I am proud she was my daughter and I loved her more than anyone or thing on this earth. I thank all of you for your stories; you parents are still changing the world of its preconceived notions regarding people with DS. Back another day!
When I was pregnant with Russell, my second child, I was asked by my midwife if I wanted the AFP test. Since genetic things didn't run in either family and I didn't have one with my daughter, I told my midwife "No". After my doctors appt I went to the lab to have other blood work done instead. I went on my merry pregnant way and two weeks later my midwife called to say my AFP test came back positive for DS. I told her I did not have an AFP and did not sign for one. She thought I did. I told her I did not and thougt it was odd that they gave me one anyway, especially without my written consent. My midwife assured me that there are alot of false positives and since I was 29, the test was probably wrong. When we went for the ultrasound, the doctor knew right away that Russell had DS. I had the amnio and it confirmed it. I know that God was watching out for me that day in the lab and made it possible for me to have an AFP test. I know they are not accurate, but I had one for a reason. It trips me out to know I was being watched over and he helped me make a clear and accurate decision based on knowing before and reading lots and lots and lots. I don't know what I would do without my son, Russell or my midwife, Sue. We bonded over the whole experience and it was wonderful!!!
Hi my name is katie and about two years ago I met a very special person.His name is noah and he has Down syndrome.The very first time I met him I felt like I was in heaven.I almost died I known that he was going to be a very big part of my life.I had just met my friend david N. will have to go will continue tomarrow.
My daughter was born Sept.28,1999.. During my pregnaucy though we had NO idea that she would be born with down syndrome... All of my ultrasounds and tests came back normal.. And from what the doctors had told me it was not very likely for someone my age to have a child with down syndrome.. I was 20 and my husband was 21... But the next morning after I had her the pediatrition came in and told us that they thought she may have downs... I was so upset and devestated that all I could do was cry.... I didnt really know that much about it so I didnt take the news very well.... But she has no heart problems or anything... She is in an early intervention program and it is great!! She does very well...She is almost 5 months old now and I wouldnt trade for anything... She is the most precious gift God could have EVER given me and my family..
My Mom and Dad were 22 and 23 when they got married, and 2 years later had their first baby. Mark was gorgeous, with pretty brown eyes and almost black hair. Mom was told he had Down's Syndrome, and I guess they were both devastated, and a doctor had suggested they put him in an institution. This was 1955 when he was born, and lots of people did that back then. They even checked one out, and when they saw so many kids who looked just like Mark and were just sitting there doing nothing, Mom said "We're taking him home, and love him", and that's what they did. He was a bit slow, but did everything at the high end of normal. He walked at 1 1/2 years old, and was potty trained by the time he was 3. After hearing all the sad and frustrating stories, I almost hate to say that he was a really very easy baby, my Dad says. Bryan was born a little over a year later, without Down's, and they all went to the University of Washington for testing to see how likely they were to have another baby with Down's. They were no more likely than other parents. When my Mom miscarried her 3rd baby and couldn't have more, they wanted to adopt. When my brothers were 9 and 10, I came into the family. When Mark and Bryan were little, they were into mischief, like any other kid. What one didn't think of, the other did. They were very close. I of course don't know any different but to have a brother with Down's. But I can't imagine what life would be like without him. I've always been closer to him than to Bryan. Mark was always the perfect child, and sometimes that was a bit aggravating. He used to try to get my attention and I would ignore him, because he was purposely trying to annoy me, and would tap my shoulder until I couldn't take it anymore, and would yell at him. So of course I was the one to get in trouble! We all treated him just like anyone else - taking him everywhere with us, and seeing people smile at us. He's so adorable, and so sweet everyone loves him. He knows more people in this city than the rest of the family I think. There's so much to tell about him. And I've already written so much. But I'm so proud of him, and I like him so much, and i've learned so much from him. Patience (I needed that lesson!), not taking anything for granted, and love. He finally went from working at a sheltered environment with less than min. wage to washing dishes at a Pizza place. He keeps saying he's the Manager now! Everyone there loves him. He does such a good job. When my Mom died in 1989, and someone called the house for her, he said " She's not with us anymore". He calls my stepmother Mom, and when he refers to Mom, he calls her "old mom" - she would have loved that! I can just see her slapping her forehead after that one. When my gerbils got out and climbed under the refrig, Mark was the one with the presence of mind to block the doorways with books so they couldn't get out, not me! When Bryan got married, Mark and I went down the aisle together and he knew who to watch to see that nothing went wrong - he followed the guy ahead of him when necessary, and the one time I had to lead and he was to go back down the aisle, he knew to watch me, and I was the one who almost forgot. And he has a way with animals - when he was little a mean horse lived across the road and he was found under the horse, patting his stomach. We're lucky he's still alive after that. He's a very high functioning Down's Syndrome person. And very smart. His film career (I'm a movie star! he said) consists of "Mark's Story" a video of him in his home and of interviews with him and his family. It was shown to people in Washington and in Virginia; his Aunt showed it where she lives. He's quite the favorite among everyone. Sorry this is so long. I'm not too good on the internet yet and never know if I'll even find this webpage again! I loved reading everyone else's stories. The sad and cute ones made me cry. Actually that was almost all of them. I pray that all of you will have the courage and strength and imagination it takes to know someone with Down's. It's worth it.
A Special Gift On May 12th, 1997 Jessica Mary Miller was born, 6 pounds even. After 3 1/2 hours of a very hard labour and 5 minutes of waiting to see our little girl the doctor finally brought her over and placed our little bundle of joy in my arms. Then the wonderful doctor who helped bring Jessica into our world, placed her hand on my shoulder and proceded to say," your daughter has ;" and before she could say anything else, I said," Down Syndrome". Don't ask me how I knew this I just did. My husband and I didn't know that we were going to have a child with DS. We were shocked and saddened at the same time, but that was n't all the surprises. After they checked Jessica over, and ran tests, the doctor then returned with some more news. They discovered she has two small holes in her heart....But after Jessica had an echco cadiogram done they discovered that the two holes were actually one very large hole. A V S D they called it (Atrioventricular Septcal Defect), and had to be repaired when she get a little stronger. After three long and stressful months and numerus trips to the doctors in Peterborough and Toronto Hospital For Sick Kids Jessica had open heart surgery. Now at 2 1/2 years old Jess is doing great. She is a very happy outgoing child. She still needs to have more surgery, but nothing in the near future. Jessica receives, physical , speech,and occupational theropies at 5 Counties in Peterborough. She was receiving Infant Stim from the Health centre by a wonderful lady , Margret Johnson Jones. Now Jess has graduated to a Resource teacher. With the help and support of C.H.A.N.G.E.S (Children and Adults for Normalization, Growth, Equality and Socialization), they opened our eyes to see that we are not alone. There are people and places out in our own comunity that will help Jessica build her confidence and to become an independent person . Except for her appearance and being a little slow she is a child that needs the love, support, and acceptance in the comunity we call home.Since Jessicas' birth, my husband ,our 4 year old daughter and I look at life alot differently now. There will be many battles to fight in our society. With the love and support of many people, we will be able to over come the various obsticles we will be facing. We have had people say to us," Special children are given to very special people", and"God doesn't give us for which we can't handle". This maybe true but you all have special lives to live,and I think most handle life well. Down Syndrome Awareness Week is November 1-7th, please take a minute to meet some of the children and their families and see what C.H.A.N.G.E.S is all about.. Teresa Miller Ennismore, Ontario This was submitted in our local paper in November,1999. That is my story, so far.Sorry about the spelling it is very late.Thanks for reading"MY STORY"
To new parents I would like to say, you will never experience a greater love than your new baby. My son is the most loving and caring child I have ever met. Luckly there are so many advances in medical and education of children with down syndrome. I think everyone goes through some type of denial or blame, but just remember that's normal, and in the end you get a beautiful loving child. You'll get through the obstactles together and look back and realize you made it.
My name is Michelle. I have a wonderful six year old son with down syndrome. I guess I better start from the beginning. August 25, 1993 my beautiful son Joey was born. My husband was in the Army at the time. Stationed in Honolulu, Hawaii. All my blood tests came in normal, ultrasounds looked great. We had no idea how much our life was going to change. I was 21 and my husband 22, our first child. I had no idea a baby shouldn't be purple when they are born. Sounds stupid but I was young. After all the problems, a doctor comes in and tells us our son has down syndrome and that he can help us get rid of him if we want to. I couldn't believe it. He's talking about my beautiful baby boy. Joey doesn't have the heart problems or thyroid problems associated with down syndrome. We are very lucky in that aspect. He's had abnormal problems. When he was 10 months old, he was diagnosed with gall stones. Had a surgery at Tripler Army Medical Center for that. We were in the surgical waiting area when the doctor came out and said they couldn't find them, so they just closed him up. I couldn't believe that. That prompted us to get out of the Army on a hardship discharge. The best move we ever made. We came home to Cincinnati in 1995 and Joey had his gall bladder removed in 1996. Since then he's had his tonsils and abnoids removed due to obstructed sleep apnia, and had tubes put in his ears due to so many ear infections. He hasn't had one since. Joey a couple of weeks ago had his first seizure. He had an EEG and it showed he has abnormalities in the left side of his brain. This is the only seizure he has had. We're waiting to see a neurologist. Joey now has two sisters and a brother. The house is very full. Mostly with love and toys. I can't imagine not having him. He's my buddy. With all his hospitalizations I wonder "Can anything else happen to him?" I just put the surgeries on here. I hope everything works out with the seizures, and hopefully it was a one time thing. Well, that's the story of Joey(Bubba). I hope to be able to talk to some of you that can help me understand the latest and maybe just be a shoulder to cry on. Thanks, Michelle
My daughter was born aug '92.I was just 30 and had negative afp triple test and two very "normal" appearing ultrasounds. She was my first child and has DS...thankfully medically very healthy. Needless to say I was devastated and plunged into clinical depression.It wasn't that I couldn't love my adorable baby.I just felt that as though I couldn't do anything right...my body even betrayed the baby making process.All my life I have been a square peg...and instead of seeing myself as a unique individual I always saw myself as a nerd. I felt very sorry for my daughter..and for myself. It has been a long row to hoe...but I just want to say to any new parents who may be reading , that my daughter has helped me grow up , not feel sorry for myself. I have been given a gift, she is my little teacher . I now know what its like to have priorities straight. It doesnt matter that I raise a child to be the president,or a prom queen,but that my children grow up to be caring and with good character. I feel I have been given a secret that parents of "typical" children don't know.Someone wrote ( I wish I could remember who) that we experience parenthood MAGNIFIED ,that we our lows will be extremely painful and raw, but that our JOY will also be enormous , dizzying , INTENSE! I am not depressed ..I am very satisfyed with this perfect daughter made for me...
My daughter was born aug '92.I was just 30 and had negative afp triple test and two very "normal" appearing ultrasounds. She was my first child and has DS...thankfully medically very healthy. Needless to say I was devastated and plunged into clinical depression.It wasn't that I couldn't love my adorable baby.I just felt that as though I couldn't do anything right...my body even betrayed the baby making process.All my life I have been a square peg...and instead of seeing myself as a unique individual I always saw myself as a nerd. I felt very sorry for my daughter..and for myself. It has been a long row to hoe...but I just want to say to any new parents who may be reading , that my daughter has helped me grow up , not feel sorry for myself. I have been given a gift, she is my little teacher . I now know what its like to have priorities straight. It doesnt matter that I raise a child to be the president,or a prom queen,but that my children grow up to be caring and with good character. I feel I have been given a secret that parents of "typical" children don't know.Someone wrote ( I wish I could remember who) that we experience parenthood MAGNIFIED ,that we our lows will be extremely painful and raw, but that our JOY will also be enormous , dizzying , INTENSE! I am not depressed ..I am very satisfyed with this perfect daughter made for me...
My daughter was born aug '92. And I have come to a place where I am grateful for this treasure I have been given. She keeps my feet on the ground and my heart soaring in heaven ,full of love and pride. Happy Valentines Day Paige!
Rachel is now 3 years old. She has 2 older brothers, Charles, 18 and Daniel, 4. During the whole pregnancy I kept thinking - another boy ... then when she was delivered and the doctor said "It's a girl" I had to look for myself. Wonderful. Thank you God for a little girl. Rachel has beautiful strawberry blonde hair, big blue eyes, and a sweet smile. I love her so much. I can't remember life before Rachel. She is a special challenge.
Hi,my name is Doris and i have a daughter with DS her name is Jillian. She was born on April 3, 1997. My story is not very much different. She has brought so much joy into my life i cant explain. Everytime she completes a task or learns something new I cry tears of joy. It was hard in the begining. Jillian underwent heart surgery she had an ASD & VSD and came through with flying colors. She is so vibrant and just brings sunshine into all our lives. Thank You for letting me share my story.
I have 3 sons, aged 13,6 & 5. My husband and I have long wanted to have a baby girl. We had one of the greatest God-given gifts to us when our baby girl was born on August 18, 1998. I had the ultra-sound when I was 7 months on the way and we knew that our baby is going to be a girl. The whole family was excited, including grandparents, uncles and aunts, cousins and friends. We though of a name and a nickname even before she was born. We named here LEIA MAIRI (from Princess Leia of Star Wars fame cause she was our princess from heaven), and nicknamed her JOEY. Sad to say, the excitement of my childbirth was taken away when all our attention was given to our eldest son who was kidnapped on August 14, 1998. Due to all the emotional stress, fear, anxiety and trauma, I gave birth 3 weeks earlier than my scheduled CS operation, 4 days after my eldest son has been reported kidnapped. We didn't know that our girl has DS until after she was 10 days old and it was time for her visit to the pediatrician. My eldest son has been rescued then after 12 days of ordeal in captivity. It was only then that she told us that we might be ready now for another shock. Our pediatrician wanted our baby to go through the series of tests (newborn screening, Chromosomal smear, etc.)to confirm if she has DS. We do not care though if our baby has DS or not because we know that she is a gift from God, and so be it. When we got her results and knew that she has DS, the first thing we did was to schedule her visit to a geneticist, and to a developmental pediatrician. Our baby was performing at par with regards to her reaction to sound, moving objects and all other tests she took were normal. We were so glad that she was doing well until our visit to the pediatric cardiologist who told us that she has PDA and VSD. It was after 3 months that her health began to deteriorate.She was in and out of the hospital for 2 months and December 29, 1998, she was admitted to Pedia-ICU and was there for a month. She died on a Tuesday, Jan. 26, 1999. It was ironic to think that she was given to us on a Tuesday and was taken away from us on a Tuesday. It doesn't matter what we want for her, it's what He wants for her and Thy will be done. If she was meant for us, He would have made her well and we would have taken her home. Up to now, I still miss her, actually we all miss her. At a very young age, she really smiles a lot when we play with her and she even chuckles when she gets so happy. She enjoys listening to music by her side and playing with her crib exerciser. She enjoys the squeaking toys around her and she moves her head to sound of the voice calling her name. We were sad she had to leave us so early, but we are also happy that she now feels no pain, no hunger, no sickness. We know that she is happier now with our Creator in heaven. Our LITTLE ANGEL is always looking down upon us.
Hi I have a little boy with Down syndrome who is 7 years old. We also have 4 other children, Christopher aged 10, Melanie who is 9, Danny who is 7, Lee who is 4 and Ryan who is 3. Life is very hectic with lots of ups and downs. Danny had a lot of problems at birth but our local hospital missed his heart defect and he nearly didnt pull through. They left his heart defect until he was 11 months old and it should have been done when he was born. He is fine now though with a few little problems. He has bad asthma and hearing problems. He isnt potty trained yet but Im still trying. He goes to a special school and is learning quite a lot. At the moment, we are going through a difficult stage with bullying his little brothers. I dont understand why he bullies probably for attention but Ive always treated Danny the same as my other children. I never treat Danny at special, I dont think you can when you have other children. They can feel left out as well. If Danny is good he gets a reward same as the others and if he is naughty he gets punished like the others. But I am trying to find a punishment for Danny so if anyone is going through the same problems please feel free to email me. I have a time out chair and he is put in his room if he bullies. Ive tried everything from timeout to no biscuits but nothing seems to bother him. Danny can be very loving and when he smiles he melts our hearts. He looks like an angel when he smiles. All my children do. We love children and always wanted a large family. I would have had more but decided that 5 was enough for anyone. I was lovely finding this site. I never knew one existed.
My son Aaron was born 21/2 years ago with DS. He is the greatest gift God gave me. I am a full time working mother and it is still difficult to leave him every day. He attends Day Care 4 days a week and is in Special Education 2 1/2 days a week. When he is was born, the doctor told him he had Down Syndrome and left the birthing room. My husband and I were left there with a blank look on our faces. Later that day, the Head Physcian of the Neonatal area came to my room. He explained that Aaron had Down Syndrome. It meant he would have some type of mental retardation and possible heart problems. He was in critical status because he was 2 weeks early and blue. His lungs were not working properly and only time could tell. As determined as Aaron is, he made it through with flying colors. We lucked out and Aaron did not have any heart problems and his muscle tone was good. Now that he is 2 1/2 toddlerhood has settled in and the fight to win control has started. We have introduced the potty chair in the morning and he says only 4 words.(MAMA, DADA, ALLDONE and OUTSIDE). However, he can understand every word and phrase you say to him and communicates through jesters and sign language. He loves Sesame Street and Bear in the Blue House videos and his favorite toys are Rock-n-Roll Ernie and Elmo along with trucks, buses and dumping his blocks all over. I love him very much and would not trade him for the world. If any one has any tips on toliet training or discpline in general please respond.
Hello! My English is not very perfect, so excuse me if mistakes will be existed. My son Jouni is 15 years old. It was summer 1984 when he has borned. He is my first child. I newer thought possibility that I could have a child with down syndroma. He borned three weeks too early and was very small. First, of course, I was shocked with my husband, but after few days it was going better and better. I began to be interesting of him and our future. He has been quite healthy, no heart disease. He likes music and looking photos. He is very gentle and nice, sunny. I have then two sons more, they have borned 1988 and 1997. They are s.c. normal. Here in Finland children with down syndroma starts school in 6 year old. Now Jouni has one year left. Then we will plan his future – more school or working. This is all now, I wish you all good Day of Valentine and you can answer me sometimes if you want. Best wishes Asta
A lot of you folks with children with DS will not want to hear this, but it happened to us. Our only child, a daughter with DS, died from her heart defect at age 6. It still happens, even with so-called "miracle" surgery at the so-called best hospital in the world. They weren't the best, and her care wasn't good. Want to hear more? Feel free to email. We loved her desperately & only wanted her to live. We will never trust a medical person again. Our baby girl would more than likely have died anyway, but this hospital added to her pain in the worst possible way. What way was that? They did not listen nor did they hear us, her parents, who knew her better than anyone. From what I still hear from parents, this is still very common at this facility. So feel free to contact me for info.
A lot of you folks with children with DS will not want to hear this, but it happened to us. Our only child, a daughter, with DS died from her heart defect at age 6. It still happens, even with so-called "miracle" surgery at the so-called best hospital in the world. They weren't the best, and her care wasn't good. Want to hear more? Feel free to email.
I looked forward to being pregnant all of my life, and it was everything I thought it would be. I was never so healthy or happy, and never sick for a day of it. The only time I was unhappy or concerned was when I was about two months pregnant when I suddenly knew, just KNEW that my baby had Down syndrome. I was so upset, I was inconsolable. I called my mother, my best friend, talked to my husband...they all said I was crazy. I tried to tell me doctor but I was crying too hard, so my husband had to say it. I had the maternal serum screen test, and my odds were normal for my age (25). I had two ultrasounds, and they showed nothing. I was too young to qualify for any other testing, so I just forced myself to forget about it. I so badly wanted it not to be true.I did not do very much to prepare for the baby...we couldn't. I was working full time, and we were in the middle of renovating our house (unexpected pregnancy). It was due in early September, and I planned to start on the baby's bedroom in August. On August 1, my husband and I took our only break from working on the house in over a year and spent the day together outside, shopping etc. I even bought baby diapers that night, the only thing I had ever bought for the baby. We rented a movie and settled in for a relaxing evening together. I am sure you know what comes next!
The delivery was as easy as the pregnancy, and despite him (it was a him!) being early, and despite my earlier fears, it never occurred to me that anything would be wrong. And, as far as I knew, it wasn't. James was so beautiful. I have read that DS babies are extra nice because their features are small, and don't look funny in their little faces:). Everyone noticed the cute space between his toes:). I had to stay in the hospital an extra day because he was very sleepy, and was not breastfeeding very easily, but that was all. When I got home, my mom had even surprised me by having a toilet put in the future third floor bathroom so that I wouldn't have to go downstairs to pee every time after having a baby!
In some ways, he was very easy. He slept all of the time. ALL OF THE TIME. He never cried. But it took 45 minutes to wake him and 45 minutes to feed him. And for the first week I fed him every two hours because he was so small. I told the doctor this and she explained that he was sleepy because he was early. He had routing check ups every week. One of my friends asked why his eyes slanted. I told him he just had a funny new-born face. We all played with James' limbs and laughed at how limp they were. I took funny pictures of him on his back with his legs spread all funny. We chuckled at how relaxed babies must be. (None of us had been near a baby before). Meanwhile, I was on my feet, plasterng and sanding the walls for the new baby's bedroom three days after he was born!
At his 4 week check-up I noticed that our doctor was more interested in James than normal. I was flattered. Then she leaned against a counter, and said that another doctor had commented that there was something about his nose and eyes. My ears started ringing. I knew what was coming. She wondered if we were interested in having any genetic testing done. Oh, my husband pleasantly replied, what for? I turned to him and said, she means he has Down syndrome. The doctor said she wasn't sure, she just thought it was possible. I think she was too chicken to say it.
It took over a week to get a blood apppointment, and over two weeks for the sample to be analyzed. I don't think I breathed in as long. My son's face seemed to morph back and forth in front of me. Sometimes it looked "normal", sometimes it seemed obvious that James had DS. I felt very alienated from my own baby, because I thought I did not know who he was. I guess I was in shock. I wish any of the health practitioners we saw during that time had just been brave enough to say, "Look...it's true. The tests are just a confirmation." Because, looking back, it must have been obvious.
Well, my husband took the call alone and had to pass it on to me. I did not take it well. Really, I felt I was hearing that my baby had died and been replaced with another. And then we were alone with him. James was 2 mos, then. Our doctor didn't even call until days later, and then only to find out if we knew the results. She was surprised when I said that I would see her for our regular appointment. After that, I found myself another doctor.
It has been a long, difficult road since then, but we have made it. James was enrolled in infant stim classes right away, we have had infant workers,speech and physical therapists coming to the house..all for a baby who is just now 18 months! We were lucky that he has had no health problems, and that we have so many supportive friends and grandparents.
I am still pretty wretched some of the time...I haven't bounced back as well as some of you have. But now when I see James, I see a beautiful boy. Mostly when I am sad, it is because I wasted so many months crying when that should have been spent enjoying a new baby. When I think about what I would do if DS could be cured...I don't even know if I would do it. What of the wonderful things about him would disappear with the DS? I couldn't risk it.
Would it have been easier to learn about James' DS right away? Maybe. But if there is some master plan for us all, I think that the reason I did not find out for two months is so that I would keep him. Knowing how I felt during the first year, I cannot blame any parent who does not want to keep their DS child. But I am relieved that I kept mine.
If there are any parents reading that are still in the first stages of grieving like I was, it WILL get better. I still dream, too, about what my life would be like if James did not have DS. But then I would have to give up the life I have, and I would miss James so much. And if I can come this far, anyone can.
Iwas 36 when my daughter Annie was born. I've met quite a few other mother's whose kids have d.s. & everyone uses the word devestated when describibg how they felt hearing the news. I can honestly say I wasn't devestated. Scared, worried, definately, especially when we were told our newborn might need open heart surgery. I felt devestated after my 2nd & 3rd miscarriages, thinking I'd never have a child of my own.So when I actually stayed pregnant I didn't care what was wrong with the baby as long as it was alive. Also, d.s. didn't scare so much because I had been lucky enough to know a girl w/ d.s. while growing up. Her sister was in my class & one of my friends. Their mother became our Girl Scout leader (looking back now, it was probably the only way she would be allowed in G.S.)She could do everything we did, as far as I could tell, even though it was sometimes difficult to understand her. She even knew how to ski, something I certainly didn't know, so when Annie was born I thought, so what? what's the big deal? Of course now I know there is a wide variation of what people w/ d.s. can & can't do. Luckily, Annie has been blessed w/ a healthy body ( she didn't need surgery after all) & the ability to learn quite quickly.She also has 2 doting parents, 4 adoring grandparents & a bunch of loving aunts, uncles & cousins. What does worry us, though is that she has no siblings & may end up alone in the world.Hopefully her cousins will help out, but they're all growing up in a different state. I like to think the words of N Merchant's song "Wonder" apply to my Annie--"she'll make her way". That song has helped me get through some pity parties I've thrown for myself. Because even though I wasn't 'devastated' d.s. is certainly not what I would choose for my child. Abook that I've found helpful is "Changed By a Child" by Barbara Gill. I hope my story may be helpful to someone, especially new or expectant parents.Iguess we've been luckier than most because so far (knock on wood) we haven't run into any hateful situations. But her school years are just beginning. Next fall she'll be in a mainstream preschool setting--we just got the word today that she has been accepted in a particular school. Best of luck, & remember, even as bad as it may be, it was worse 20 & 30 years ago. I have great hope for the future & wish to thank all the parents of kids w/ all sorts of special needs who fought for education & inclusion in the past. All of us w/ young children owe you.
Hello -My name is Beverly and I just found this site not long ago,But have not been able to catch anyone in the chat room yet, it is all is the timeing I quess LOL... anyway this is my storie, Feburary 8th will be 18 yrs Loving the most beauiful girl I know, my daughter was born with ds and at the time i knew nothing about it,being young and stuiped I thought it was something that would go away,LOL silly me :-) But was really scary and not sure what I was going to do,being 18 my self -my whole life changed right before my eyes,as for most new parents it forces you to grow up fast. when she was a new born I bottle fed her-because it was so frustating to me,she wouldn't eat-I was crying all the time thinking I didn't know how to be a good mom.even with the bottle she took for ever to feed and she would alway spit it back up-after a couple of mo's past the feeding seemed better. she was running by time she was 16 mo's old.she has always been a little tom boy though-she would fall down-and get right back up-smile and get back to what she was doing.. at times I would have to wonder if she felt pain or not. she slept thru the night at 1 1/2 mo's old -so I don't know what it is to miss to much sleep :-)although I would have to go in and shake her everyonce in a well to make sure she is doing o.k. I think we all do that at some point? Potty training wasn't to bad either-since she slept thru the night I only had to potty train in the daytime,I would wake up first then go get her and take her to her chair,as far as day time -I was lucky to be a at home mom,so she ran around alot naked at put her on it alot,I would say about 3yrs old she was totally train yeah!.. I remember thinking she would never learn to ride a two wheel bike though,she couldn't pedal and look where she was going LOL..I kept telling her -Erica they don't make a ten speed with training wheels.she finally learned at about 12 I think..That was the happyest day for her-she was able to ride her bike with her cousins. tieing the shoe laces were a big step to-Thank God my sister was able to get that one. she loves music - nsync and backstreet boys are her favorite right now. she hates shopping -we go in the store and she wants nothing but to know what direction the books are at-LOL she is funny and will make you laugh-she is your tipacol teenager-she has never asked why she is different-she doesn't think she is I quess :-)she has never come home crying from school-which I thought she would? she is one who will tell who ever is making fun of her-where to go..she thinks they have the problem not her -way to go Erica.she has alot of friends as she is a social butterfly-and everyone loves her spirt. she is a senior this year.can't believe it -already-.she will stay in school one more yr-then maybe to the 18-21 program. where they work more on job skills etc..get them ready for the real world of work-that we all seem to enjoy (right):-). well I will end it here -please e-mail me if anyone wishes to chat..or maybe I will find some of you in the chat room? thanks so much for reading my story . God Bless all of you..
I am 25 yrs. old and grew up with an aunt with DS. My mother's sister was thirty years older than me, but my sister's and I knew her as just one of the girls. Growing up with her, we didn't think anything about her being different, we knew she was special to us and that was all that mattered. I used to get so upset when we would go shopping or out to eat together,people would stare and giggle, it would upset me so much that I just wanted to tell them off. I didn't realize until I started getting older, that people sometimes don't understand and they do not know her the way I do. My Aunt Ruby had such an impact on my life I can't even begin to describe it. I have pictures of her holding me when I was only a few weeks old. And now I have pictures of her holding my two children. She has always been there, I can't imagine life without her. I can't bear to think what the next few days will be like for my family and I. My Aunt Ruby passed away yesterday at 1:15 pm. My older sister and I are going to the funeral home today to fix her hair. I'm not sure I can do it. She brought so much joy to our entire family. How could anyone possibly think that people with DS are a burden? She was loved very much, and now she will be missed horribly.
My story start's on October 13, 1996 when my first child was born at 4 in the afternoon. My due date was November the 7th, however my water broke on October the 12 so there was no turning back. I had a rough pregnancy and a rough delivery but when they placed my beautiful girl in my arms I forgot all of that. Jesica weighed 6 pounds and 3 ounces, pretty big for being 3 weeks early. I had deciced early on th breastfeed and tried this right away. Jessica seemed just fine to us and for 24 hours we thought everything was great. On October the 14th our nurse practioner told us she noticed Jessica's eyes were wide set, I am a nurse and instantly knew what she was going to tell us. After many tears and sleepless nights I accepted this and was even more determined to breast feed. I did this every 3 hours and it usually took an hour or hour and a half. Jessica as been extremely healthy and she is now 3. She is in preschool and doing great. She has had early intervention since she was 6 weeks old and is beginning to use 3 and 4 words together. Our family is wonderful and Jessica can bring a smile to anyone's face. She now has a younger sister, Jennifer and just loves her to death. Jessica has taught me to never take things for granted and appreciate all that God has given us. God bless to everyone and thier wonderful children. Laurie
Hi: I just found this site, and read a lot of the postings. I am truly happy to find this message board and hear all the happy stories regarding DS children. I am the grandmom to a 7mo old baby boy, born on June 18,99. He was born at home with a midwife, and had to be transported to hospital very shortly because he started to turn blue. He was in Sick Kids hospital the first 5 wks of his life. He seemed to get so much stronger and active after he came home. He has 2 brother and a sister, from mom's first miarrage. This is my son's first child. He has been back in the hospital for problems keeping his formula down, after it was changed to a non milk bases formula, he seemed to do fine in that area. He does not have any heart problems, but he is experiencing problems with mucas in his throat when he lies down to sleep, this has gotten worse as he gets older. He now has to sleep in his car carrier, which is so uncomfortable. I wonder if anyone else has had this type of problem with their baby. We are so worried, I don't know how we would handle anything happening to this precious child, he is the light of our lives. Please email me if you have any informaton regarding problems with lungs in DS babies.
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Hello I Would like to share my story with u all. I am 23 years old and have a 3 month old son with DS. My prenancy was a very easy one i never got sick i could eat whatever i wanted to no heart burn i chose to go to a midwife instead of doing the traditional hospital thing well things went on fine till i was 34 weeks along at 17 weeks i did the screening for Ds and it came back normal so no worries there Well at 34 weeks along i went for my two week check up my midwife did her routine check up and noticed i was a bit larger than i should be i was mesuring at 38cm she didnt get too concerned so the next appointment at 36 weeks i went back and was mesured at 42cm she then became very concerned so she sent me to get an ultra sound the next day so i went and thought nothing about it layed there for 2 hrs and the radiologist told me that my sons abdominam?? was larger than his head so that concerened me then i wasnt able to leave the hospital where i was getting the utra sound and then i paniced i knew something was terribly wrong i looked at my husband and said theres something wrong why wont they tell us he said to be patient i then started to cry fear struck my body i had previously lost a baby at 16 weeks so the memories came back to that terrible day i had to tell my family i had lost our babyi couldnt bare to tell then once again i thought my son was dead they gave me no information and sent me home i called my midwife and she said she had an appointment made for me at 9:00am the next morning. i knew something was seriously wrong so i cried all night long praying that god wouldnt take my son from me before i could tell him "I LOVE YOU" That mornig i was at the specialists office and he told me my son had a heart defect and he had extra skin on the back of the neck and he had shorter arms and legs. but couldnt really tell me anything conclusive that he was scheduling another ultra sound with the cardiology team i was scared worse now so i went they told me my son was breach and had a heart defect associated with DS i asked if my son going to die before i can say to him "I LOVE YOU" he said no he wasnt dieing but he wouldnt make it past 4 months i was terrified now knowing he could die they told me what they do with children born with heart defects especially the kind he has they do open heart surgery they explained the procedure. we went home a little more at ease knowing he wasnt dead or dieing well i went back to work the next day i was having contractions so i stopped working and stayed home and rested as much as i could well my son wasn't due till the 17th of oct well i was having contrations all day off and on on the 5th of oct but very mild so my husband went to work that night i told him we were to be at the dr.s at 10am the next morning so they could do an amniocentesis to find out if his lungs were developed enough to do a c-section on the 7th so i told him i would be ok to go to work and not worry well little did i know at around 11 pm i was on my hands and knees scrubbing the kitchen floor and bam it hit i was in labor but being this was my first child i didnt know what labor felt like so i kept scrubbing and the pain just wasnt easying up so i got in the shower and stood under the warm water well that didnt help so i sat down a bit and then took another shower this time i decided to time the pain cause i thought maybe i was in labor well my contrtions were 15 mins apart and we live 23 miles from the hospital so i figured it was time to go well i didnt have a phone a the time so had to walk to my sis in laws house well it is only about 5 blocks to her house well my contractions went from 15 to 8 mins apart by the tme i got there she rudhed to get me to the hospital she kept timing the contractons and they were now 3 mins apart i arrived at the ER a little after 2 am and they rushed me to the 3rd floor and doctors came in checked me out and said give her a shot to stop labor well they gave 2 shots and checked me aain i was dialated to a 4 withing the hr i was at 8 they rushed me in to surgery they took him by c-section he was a footling breech so was dificult to get him out well he was born at 4:55am on the 6th of oct. we didnt make it that far he was determined to come out walking lol well the story gets even better from here. but will post it at another time i am tired and it is very late so see you all soon with THE REST OF THE STORY LOL night
This little boy I know has downs he is so cute i wish you could do a interviwe on him
I have a little sister, Racheal with Down Syndrome. She is exactly two months and two days younger than my oldest daughter, they are both eight. Racheal is a true joy and an angel in our family. I just learned of the UNOMAS 21 sight a few minutes ago. MY mom called to tell me of the internet address she has on a sweatshirt Racheal recieved in school. My mom was very excited that I would be able to tap on the net to this sight. I was thrilled to see that there are chat rooms and this story sight available. My mother would be thrilled, as I would be, to hear from others with down's children, siblings, or otherwise. Racheal is being mainstreamed into kindergarten, as well as special classes throughout the week. She is a true bundle of energy and joy. She tries to be a stranger to no one. Racheal always carries a smile, and if you are not, she will be sure you are after she has been with you. Her favorite pastime is watching Disney movies, and Hardees. I hope to hear from someone at this sight. My mother would be absolutely thrilled, and so would I. Yvette M Walters
My name is Rhonda Trimmer. I'm a 22 year old mother with a 5 year old boy with Down syndrome. His name is Zachary Elliot and he is the love of my life. He been fairly healthy. We his parents are going through a rough time with him and his development. He has also been dignoised with Autism and he has some Neuroligal problems. we have just found out all this as of recent. We love Zachary no matter what is wrong and we try to stay strong but it is very rough being young and not sure of what we are doing. any ways if anyone reads this and can offer any advice we sure would love it. Thank you.
My name is Rhonda Trimmer. I'm a 22 year old mother with a 5 year old boy with Down syndrome. His name is Zachary Elliot and he is the love of my life. He been fairly healthy. We his parents are going through a rough time with him and his development. He has also been dignoised with Autism and he has some Neuroligal problems. we have just found out all this as of recent. We love Zachary no matter what is wrong and we try to stay strong but it is very rough being young and not sure of what we are doing. any ways if anyone reads this and can offer any advice we sure would love it. Thank you.
Our story started a little early than most of the stories I have read here today. My husband and I were married when I was 15, and he was 18. We were very young and scared and had no idea our baby had Down Syndrome until the day he was born. Daniel (the name means "child of God" and was picked out before he was born) our little gift from God was given to me early in the morning on my 16th birthday. We live in a very rural area, and my doctor was not very well educated about DS. I was told that I needed to learn to love him, that he would never do much in life and I would have to take care of him his entire life. He told me that maybe someday he would learn to brush his teeth. That glum outlook scared us to death. We were so young and I didn't know what DS was, but I did know what retarded was and that was the word that was used to describe my new baby. At first I wondered if we should save the name Daniel for another baby, I didn't know if I should still have a baby shower. I didn't know how to act. I didn't think my family or friends would want anything to do with this baby. I was so wrong! My husband and I decided that our doctor must be wrong. We were convinced that it was all a mistake and the tests would prove that he was normal. But then Danny started to turn blue in the hospital and had to be flown to Phoenix, 300 miles away. Danny was admitted to the NICU at Phoenix Children's Hospital. The nurse that was assigned to Danny the night we got there was a real sweetheart and she had a sister with DS. She recognized Danny's physical attributes right away and told me that her sister had DS too. I was shocked that she knew what the doctors suspected. I asked her if the test had come back already, how did she know? She said no, the test had not yet been confirmed but she explained why it was probable that the test was correct. I started to cry and she gave me a big hug. She started telling me stories about her sister and how wonderful she was. It was so nice to hear that things were not as bad as they had first looked. That was 14 years ago, Danny has two younger sisters without DS. Danny has changed my entire family. We have become much closer, we know what things are truly important. Danny has had a rough road, he had had several surgeries to try to correct his severe obstructive sleep apnea. He also has a heart defect. Our biggest problem has been living in such a rural area. We have no parent support group and our medical care is lacking in quality. But we are hanging in there! Danny cracks us up all the time, he is just now starting to use full sentences, and his speech can be difficult to understand but he has a great sense of humor. Just the other day he had me laughing so hard. He was under his bed with the dog, I have no idea what he was doing to him (the dog wasn't yelping or anything) but as soon as I opened the door he ran out. Danny looked at me and as clear as can be said "Mom, you let him get away!" I laughed so hard! The best thing about Christmas is getting to experience it through Danny's eyes. He is thrilled with everything. The lights, Santa, and the presents....He loves anything he gets! He shows the same amount of enthusiasm for his "wonnerwear" (underwear) as he does for his toys. Not long ago I asked my husband (yes, we are still together) if he had one wish what would it be. I expected him to wish that Danny didn't have DS. He wished that Danny was healthy, and he wanted a new boat, but as far as the Down Syndrome he wouldn't want him any other way. And neither would I. Congratulations to all the new Mommies and Daddies of DS kids....you are truly blessed.
It all began 5 minutes after I had Matthew when the pediatrician on call told me that my baby had the charateristics of Down Syndrome. I burst into tears because I had no idea what DS was. So needless to say I was thinking that it was some serious disease that was incurable. I thought it was my fault but i didn't know why because I did everything the doctor had told me to do. When I found out what it was I breathed a sigh of half relief. My next thing was how could I CURE it. Wrong answer. Well that when it really hit home that my precious little baby was never going to be cured of it. Depression as you may say set in. The whole night I dozed in and out of sleep hoping to wake up from some bad dream or joke someone was playing on me. Then a girlfriend of mine called me the next day and told me that Matthew was given to me for a reason because God only picks special people to take care of his special children. That wasn't what I was thinking at all. I figured I must have done something pretty rotten to be given this hand. But as soon as I was able to take care of my special little gift I realized that she was more right about what she had told me because since Matthew came into my life 2 years ago he has been nothing but good in my life. He has taught me so many things I never knew such as patience and to expect the unexpected. Everyday I learn something new from him. Matthew has been through alot but there is alweays a beatiful little smile that always says MOM EVERYTHINGS GOING TO BE O.K. And I believe it. He goes in for surgery this week for the second time so every night I pray to God that I'm going to give him Matthew during the surgery but to please give him back to me afterwards because he is the heart and soul of our family. Now I would like to share a little poem I wrote for Matthew about Matthew. Matthew By: Brandy Montgomery Matthew is a beautiful baby boy, He has blue eyes like his father, Blondish hair like his mommy, Ears like his MawMaw and PawPaw, Short legs with a long upper body like his PawPaw, A pug nose like his Aunt Sheri, He's perfect in every way, He has big hands with little dimples to define each finger, He has big feet with a space between his toes, Yet he's perfect in every way, He has a small mouth with his tongue to large for it, He chokes on it every once in a while, But yet he's perfect in every way, Matthew has extra folds in the corner of his eyes, They get bright eyed when he smiles, He is still perfect in every way, Matthew has a smile that lights up the whole room, When he sleepshe looks like a little angel, He is so perfect in every way, Matthew will probably never leave home, But he will be my companion for the rest of my life, He's so perfect in every way, The doctor's say Matthew has Down Syndrome, But he's my little angel, Therefore he's perfect in every way. God has blessed us all with these wonderful little children. I just can't express how much I love my little man but I hope this poem tells you.
I'm 16 years old and my cousion Rhonda ann Branch has ds,and her mother was told this when rhonda was about 6 mounths old she is now 19 and will be twenty in january,but the doctors told my aunt that she would not live to be 8. She has had many complications in here life,and she still keeps a happy face most of the time.She is the most loving caring person you could ever meet,and she is my heart and sul she is what gives me inspiration when I'm feeling unhappy she is what makes me feel good again,and now the doctors say thers nothing else thy can do fro here that she should just be able to spend her last days in peace.It will be hard for me and my family to lte her go when the time comes,but when the time comes we will know that she gave use the best gift that any one could give she gave us the gift of love and hope,and we hope that sh got the same thing from us that we got from her. I guess what I'm trying to say is never give up hope that they will be around as long as god premits them to be here,and the doctors can say what ever they wat to,but there not god so never give up hope on the ones you love,because there going to a better place when they leave this earth.So dont give up hope on them and they wont give hope up on thereselves.
I'm 16 years old and my cousion Rhonda ann Branch has ds,and her mother was told this when rhonda was about 6 mounths old she is now 19 and will be twenty in january,but the doctors told my aunt that she would not live to be 8. She has had many complications in here life,and she still keeps a happy face most of the time.She is the most loving caring person you could ever meet,and she is my heart and sul she is what gives me inspiration when I'm feeling unhappy she is what makes me feel good again,and now the doctors say thers nothing else thy can do fro here that she should just be able to spend her last days in peace.It will be hard for me and my family to lte her go when the time comes,but when the time comes we will know that she gave use the best gift that any one could give she gave us the gift of love and hope,and we hope that sh got the same thing from us that we got from her. I guess what I'm trying to say is never give up hope that they will be around as long as god premits them to be here,and the doctors can say what ever they wat to,but there not god so never give up hope on the ones you love,because there going to a better place when they leave this earth.So dont give up hope on them and they wont give hope up on thereselves.
My story began on March 20, 1997. The scariest and happiest day of my life. My pregnancy had been uneventful. At one point, the doctor thought I was measuring bigger than I should have been. He sent me to a neonatal specialist where everything seemed to check out okay. The lady asked me if I had taken the AFP and I said no. My husband and I didn't think, due to our age, that we needed to take it. The lady told me that from now on if I plan anymore children to take it. At the time I thought nothing of it. Nothing more was said. I took the week before my daughter was to be born off at work so I could prepare. Didn't get very far!! The 3rd day home I started having contractions. I went to the hospital at about 430pm and finally at 1126pm our beautiful daughter was born: Brittany Rhea. This was my first child so of course I thought she looked red and swollen etc, etc. I was in a lot of pain and very sedated due to complications after delivery called uterine atony so I did not get to hold her much. It seemed like forever before I could see her but FINALLY around 230am, they brought her in. She was so beautiful and tiny and I rested peacefully that night. I remember waking up late and thinking they have not brought my baby in. I called the nurse and asked them to bring her in and I waited and waited and waited. I called again and she said they were completing some tests and then they would bring her in. In a few moments, instead of my baby came the nurse practitioner who was to care for my baby. She sat on my bed and told me and my husband that she suspected Brittany had Trisomy 21 or Down's Syndrome. All I could do was cry because I was scared. The more she explained the more scared I was. She said they needed to check Brittany for a common heart defect. Explaining surgery, heart problems, eye & ear problems, mental retardation, feeding problems and on and on and on; I couldn't take it. I cried for a day solid. If anyone came to see me, I just bawled. Everyone seemed to be apologizing. I had no idea what to expect. My husband left the hospital and came back a few hours later with all kinds of information on Down's Syndrome that he had looked up in medical journals etc. We were totally clueless. Thankfully, Brittany only had an enlarged pulmonary valve that caused a slight heart murmur but should fix itself with time. We went home. I did not sleep for the first month for waking up every five minutes to look in her bassinet beside me. Every time she was just sleeping so peacefully, oblivious to the havoc going on inside of me. I had tried to breastfeed and that was not an option. It took Brittany most feedings an hour to finish a bottle. It took her until she was about six months to finally get up to six ounces at a time. During all this we had discovered and signed up to Early Intervention. We had a lady come to our home when Brittany was only three months old. She showed me exercises to do and stimulation exercises and oral motor exercises. So everyday we would workout 3x/day and massage with lotion. I could not go back to work part-time and did not want to put her in daycare, so I stayed at home with her. She had her bout of sickness, from bronchitis to pneumonia to several, several ear infections. We had her hearing checked when she was about 10months old. She failed the hearing test. After failing 3 more times and more ear infections, we finally got an ENT referral. She had tubes put in her ears a little over one-year old and that has helped tremendously. We just recently had to re-insert the tubes and she had her adenoids taken out. Looking back to the day she was born, I see how much I have grown. I have learned to be assertive, more caring, more understanding, and very much more patient. I feel very fortunate that my child has not had to go through as much as some other children with Down Syndrome. Brittany touches the lives of each person she meets. I had no idea there were this many people who had or who knew someone with Down's until she came along. It is almost like a secret world to which your child holds the key. A world where there is a bond like no other. A world where you have to take a look inside at who you are. Because these children only know happiness. God sent her to me because he wanted me to walk a different path and for that I am forever grateful.
My story began on March 20, 1997. The scariest and happiest day of my life. My pregnancy had been uneventful. At one point, the doctor thought I was measuring bigger than I should have been. He sent me to a neonatal specialist where everything seemed to check out okay. The lady asked me if I had taken the AFP and I said no. My husband and I didn't think, due to our age, that we needed to take it. The lady told me that from now on if I plan anymore children to take it. At the time I thought nothing of it. Nothing more was said. I took the week before my daughter was to be born off at work so I could prepare. Didn't get very far!! The 3rd day home I started having contractions. I went to the hospital at about 430pm and finally at 1126pm our beautiful daughter was born: Brittany Rhea. This was my first child so of course I thought she looked red and swollen etc, etc. I was in a lot of pain and very sedated due to complications after delivery called uterine atony so I did not get to hold her much. It seemed like forever before I could see her but FINALLY around 230am, they brought her in. She was so beautiful and tiny and I rested peacefully that night. I remember waking up late and thinking they have not brought my baby in. I called the nurse and asked them to bring her in and I waited and waited and waited. I called again and she said they were completing some tests and then they would bring her in. In a few moments, instead of my baby came the nurse practitioner who was to care for my baby. She sat on my bed and told me and my husband that she suspected Brittany had Trisomy 21 or Down's Syndrome. All I could do was cry because I was scared. The more she explained the more scared I was. She said they needed to check Brittany for a common heart defect. Explaining surgery, heart problems, eye & ear problems, mental retardation, feeding problems and on and on and on; I couldn't take it. I cried for a day solid. If anyone came to see me, I just bawled. Everyone seemed to be apologizing. I had no idea what to expect. My husband left the hospital and came back a few hours later with all kinds of information on Down's Syndrome that he had looked up in medical journals etc. We were totally clueless. Thankfully, Brittany only had an enlarged pulmonary valve that caused a slight heart murmur but should fix itself with time. We went home. I did not sleep for the first month for waking up every five minutes to look in her bassinet beside me. Every time she was just sleeping so peacefully, oblivious to the havoc going on inside of me. I had tried to breastfeed and that was not an option. It took Brittany most feedings an hour to finish a bottle. It took her until she was about six months to finally get up to six ounces at a time. During all this we had discovered and signed up to Early Intervention. We had a lady come to our home when Brittany was only three months old. She showed me exercises to do and stimulation exercises and oral motor exercises. So everyday we would workout 3x/day and massage with lotion. I could not go back to work part-time and did not want to put her in daycare, so I stayed at home with her. She had her bout of sickness, from bronchitis to pneumonia to several, several ear infections. We had her hearing checked when she was about 10months old. She failed the hearing test. After failing 3 more times and more ear infections, we finally got an ENT referral. She had tubes put in her ears a little over one-year old and that has helped tremendously. We just recently had to re-insert the tubes and she had her adenoids taken out. Looking back to the day she was born, I see how much I have grown. I have learned to be assertive, more caring, more understanding, and very much more patient. I feel very fortunate that my child has not had to go through as much as some other children with Down Syndrome. Brittany touches the lives of each person she meets. I had no idea there were this many people who had or who knew someone with Down's until she came along. It is almost like a secret world to which your child holds the key. A world where there is a bond like no other. A world where you have to take a look inside at who you are. Because these children only know happiness. God sent her to me because he wanted me to walk a different path and for that I am forever grateful.
Well, here goes... I am a 34 year old mother of 5 girls..and wife to one (very lucky man). No..NO..don't ask him!! LOL My story actually starts way back when I was about 17..seems like half a life-time ago..well, I guess it was. My first real job was as a 'house-mother' in a group home for people with down syndrome. Irony..or destiny?? So, I learned early on that these are not 'scary' people, these are not 'handicapped' people, nor are they all alike. They are people first...same things frustrate and amuse them as the rest of us..and probably even more-so, because they do not take ANYTHING for granted...for example..when a bird sings..they do not ask why..they just sing along..and when another person cries, they do not seem to question that..just try to make it 'better' and if not, they cry along... :) And this, of course is only my perception... :) After high-school I married a guy who said 'till death do us part..little did I know that he what he meant was...'till I think I am bored with you, do us part..LOL Not so funny at the time, but life does go on. I had a 1 and a half year old daughter at the time. She is now 14 and the sweetest young lady you will ever meet..(she does not have DS). Then, I met my husband, Steve..he is a true God-send..and accepted both I and my daughter whole-heartedly..and guess what?? He has an older brother with DS..he always hesitated telling his girlfriends as he found most people to be un-accepting or very judgemental about it..he is not at all ashamed of his brother..in fact has come to his defense numerous times during their childhood and still does even tho his brother is 40 yrs old now. He just avoided giving out the information until he knew the relationship was serious. Which ours soon was. He hesitated when telling me and I don't think he expected my reaction..I was not judgemental..did not assume his brother was either overly loving or overly mean..just figured I would get to know him and let him show me who he was..and what abilities..not dis-abilities he posessed. That being said, Steve and I soon married and had another daughter..she is now 12, (and also does not have DS). He continued to treat my oldest as his own, and has never shown any partiality to this day. About two years later..yup..another girl..(she is now 10). She does not have DS, either..(but I am getting there. :) By the time our third girl was about two..I was feeling those 'pangs' again..and we wanted another baby..just one more..so, within a very short amount of time..I was pregnant..they did the usual tests along with the AFP..(which they had done with the two previous pregnancies also, due to the fact that down-syndrome 'ran' in my husband's family.) About 3 months into the pregnancy, I got the phone call...chance was about 1 in 45 of this baby having down's. I was only 28 at the time, so no, I did not expect that either. And initially, I did cry..You see, Steve was at work and I had to tell him when he got home. I wasn't sure what his re-action would be..and of course it was only a possiblility.. Any doubts, or fears I may have had..immediately dissapeared..as I told him and he said nothing for a minute or so..then held me tighter than I ever remember being held and simply said.."It will be O.K." He is not one for words..but that simple sentence..along with the hug was all I needed. And, ya know, he was right..it is VERY o.k. :) (she is now 6 years old). There are times that I get discouraged..and I am being very honest...'Stevie-Marie' truly does teach me continually..not only to accept things as they are..but to feel things as honestly as I can... She was born with an ASD that really did "miraculously" close..the week before surgery was scheduled. And I am quoting her ped. cardiologist who had previously told us that he had been in this 'business for 20-some years and had never witnessed this. (he even had tears in his eyes). Said he would miss her, but was not sorry she would no longer need his 'services'. :) We were told by other so-called 'professionals' not to expect her to walk until she was at least 3..and she was running by 14 months.. One of her first o.t.'s (occupational therapist's) when working with her at the house at about 10 months of age..was amazed at her pulling up to stand at the front of the couch and retrieve a toy the o.t. had placed there..so she (the o.t.) began to almost LOOK for something more negative to write down. She did not find anything to put in her report until she pulled out one of those developmental toys that have the diffent shaped holes in which you have to place the triangle, square, and even OCTAGON shapes in the correct places. Remember, Stevie was ONLY 10 months old..and she was (of course) unable to complete this task..or even stay interested. The O.T. actually looked a little smug and said.."awww..there is her weakness..she really should be doing this by now." I quickly told the o.t. that I am sooooo thankful that no one tested my "normal" children for that sort of thing as they would have 'failed' also. :). I promptly cancelled all other o.t. activities and continued with Stevie 'on my own'. She recieved no more 'special services' until she was at least 1 and a half. We just played regular baby games..like peek-a-boo and it's mommy's turn..it's Stevie's turn..(I played this with all of them to teach sharing..) and it works.. :) I had been told numerous times that because my husband and I said, "It will be O.K.", that we were in denial..denial? Isn't denial where you say things like, "no, not our baby..she does not have down's!!" ? We were not saying that..we were simply saying, "So what?, we will take her home..and raise her..as normally as possible and get her extra help when she needs it but let's not assume she needs it until she shows a 'need'.." Much the same, as one of our other daughters requires extra help in spelling and another in math..we let them try..and then we help them..simple as that.. We have since had (yet another) baby..and yes..she is a girl..and no, she does not have DS...she is now 17 months old, and Stevie's pride and joy!! Now comes the part where I get totally honest and my emotions run 'amuck'.. ;). Stevie is not typical anything..not according to most "experts". She is not typically 'slow', nor overly 'quick'..she is also not quiet and layed-back as most tend to think she should be. And although she is a tru 'ray of sunshine' most of the time..she can drum up a storm cloud (suddenly and without warning) just like the rest of my "little darlings". It is very difficult to do family activities as Stevie still has temper tantrums and these have gone on for at least four years..she is becoming a little more managable (I can talk her through most of them etc.) but it takes a tremendous amount of patience..as does raising any child. The "terrible twos" for Stevie have lasted for at least four years now..so there is occasional 'rain' on our daily "parade".. We went to our oldest daughter's Christmas concert at the high school last night and I found myself (once again) in the girl's bathroom) in tears as I had just hoped that finally we could sit through a family event together..but Stevie was not co-operating. I found myself just standing there looking at her. And feeling more love than you can imagine..and at the same time questioning what was (still) going on. I had thoughts running through my head about maybe putting her in a private school..maybe medication, (although we have tried ritalin) and it was not the answer. So, I stood there..just trying to figure it all out..I asked God, "Are you sure?..Am I doing this right?" Stevie gets the same treatment as her sisters.. both praise and punishment..and that is how I firmly believe it should be. Then, as I sat back down next to her..(yes, we were finally able to go back into the auditorium)..she climbed over on my lap..and I was still silently crying...and praying). Stevie suddenly reached up with both of her beautiful little hands and held either side of my face. She just looked into my eyes..and my heart melted once again... You see, I think God was answering me...He was saying, "I never said it would be easy..I only said it would be worth it." *smile* :) I guess I have said enough, but in closing I must point out one more thing...Out of the five girls that we have...Stevie was the only one that was planned.. so once again, I have to ask....."Irony...or destiny???" Thank you so much for reading "My Story" and I hope that it touches you, as well as inspires you to not be afraid of your feelings..I have found that I am capable of about four emotions all at once... Joy, Sadness, Frustration and Love....and it reminds me that I am 'alive'.. :)
The Upside of Down When our third child was born on March 5 1996, the news that out beautiful girl had Down syndrome hit me like a ton of bricks. My first reaction was that somehow I was responsible for this outcome and that I had ruined the lives of my two older children, burdening them with this disaster of a sibling. I was in a severe state of shock and cried for 24 hours! I felt the pain physically, like someone had placed a concrete block on my chest. In the delivery room, only minutes after the birth but what seemed to me to be an eternity, the pediatrician on duty confirmed the obstetrician’s findings and proceeded to give is a brief summation of Down syndrome and the possible complications we might expect for Emma health. The news seemed to block anything positive the doctor had to say. All I heard was heart defects, thyroid problems, mental retardation etc and I imagined Emma to have all of the classic problems associated with this syndrome. Why me, why us, what if, if only, I wish, I wanted my beautiful girl that I had waited for, for so long. It was pointed out to us by the pediatrician, that we only had one decision at this stage – shall we keep her or give her up for foster care! We never thought for one second that we would give her up but as the pediatrician spoke of learning problems, I thought to myself and I suppose out loud – I CAN’T DO THIS, I CAN’T COPE!!! I gave myself a couple of days to calm down and get to know this little baby. Apart from looking a little different and being a more sleepy that out other two children, she was, after all, a tiny helpless baby that needed all the love and care I could give! I soon mastered breastfeeding Emma that required extra patience and time in the first few days and quickly fell in love with this delightful little package! My greatest fear was dismissed when the pediatrician gave Emma and Ultrasound for her heart – her heart was indeed normal. The news was all good from about the third day of being in hospital. We had a string of professionals visit us – councilors, doctors, physios who were all surprised at our positive accepting attitude. I think they expected us to come crashing down in an emotional whirlpool. It never happened! Emma had a physical assessment done and we were all very pleased with her abilities. Of course she had some of the traits of a baby with Down syndrome having low muscle tone and floppiness but unknown to us at the time, she was to improve in these areas very quickly. On the 5th day, we checked ourselves out of National Women’s Hospital and with hormones racing and still in a state of confusion (which I had also experienced with my older 2); I went forth and faced the crowd. There were times, especially when I was alone with Emma that I’d burst into tears feeling sorry for myself and for Emma. I realised these sort of thoughts were very destructive but normal and I gave myself time to grieve for the child that we had ‘lost’, the little girl we were expecting to bring home. Friends and family were wonderful and everyone had a story – of friends with a child with Down syndrome. Some even thought that telling us tragic stories of families torn apart after having a severely disabled child would make us realize that we were, in fact, quite lucky! We always had a positive attitude when talking about Emma with friends because we felt it would help them to be more accepting of her – it worked. We set about making the necessary contacts – the Downs Syndrome Association, Social Welfare, IHC etc and tried to find as much information as possible about Down syndrome – there was not a lot and much of it is outdated and not worthy of reading. We decided to have another baby quite quickly for Emma’s sake, so that she would have a sibling close to her age to give her a push from behind. Of course with our history, our health professional were concerned that we went on to have the usual tests to detect Down syndrome. We refused to have an Amnio due to the associated risks of miscarriage and since termination was not an option for us, we chose just the ultrasound. Although there are no guarantees with an ultrasound, we were reassured that all the measurements were normal. We had Nicki 13 months after Emma was born. She too had Down syndrome. Nicki, unlike Emma was born a very unwell baby and spent 8 weeks in NICU and SCUBU at National Women’s Hospital. She was suffering from Hydrops Fetalis, which is a build up of fluid inside the abdominal cavity, around the lungs and required draining to relief the pressure and allowed Nicki to breath more easily. She was intubated and her conditional wavered from being critical to comfortable. All our issues with Nicki at that time were about her ill health and the high chance she wouldn’t survive her ordeal. Survive she did and then we got the news about her heart. Fortunately it was a common problem – a PDA –, which was remedied with surgery. Finally, Nicki was released from hospital and into our care at home. Her health was no longer an issue though she was still weak. After 8 weeks of disrupted family life, expressing milk, traveling to and from hospital numerous times a day, we felt like a rung out rag. Fortunately, my sister volunteered to be Nicki's foster mum temporarily while we gathered our strength and resources. Nicki couldn’t afford to catch a cold or and virus and with my older children at school, I feared they could easily bring a bug home. The decision was made that Nicki would live with my sister for a short time where she could get the full-time attention she desperately needed. She was needing 6 or 7 bottles a day and each bottle took Nicki 1 hour to drink! I was angry that Nicki had Down syndrome. How could this happen again? The chances were a million to one! As the weeks went by and we had time to consider our new situation, it became increasingly clear that if it was a companion we wanted for Emma, then who better than Nicki. They are perfect companions for each other! Emma is now 3 1/2 and Nicki 2 1/2. They are such a blessing to our family and others experience them. I understand that some people reading this will be asking how we could think having 2 children with special needs could possibly be a blessing but they, along with our 2 older children, Harrison, now 7 and Claudia 6, give us the greatest joy just watching them succeed. Everyday we get strength from their accomplishments just like when you see your baby walking for the first time. The trick is concentrate on what they can do not what they can’t do – look for and encourage their abilities not their disabilities. Harrison and Claudia enjoy the company of their little sisters and their lives haven’t been destroyed because of them. On the contrary – their lives, like ours have been enhanced because of them. Emma and Nicki are so like other kids. They have a great sense of humour and make me laugh everyday. They have feelings and cry when they are sad. They enjoy learning and achieving. They play like other kids and enjoy all the same activities and games as their peers – the only limitations they have are the ones we put on them and that applies to all children. If I had my time all over again, I can honestly say that I wouldn’t change a thing. Emma and Nicki have taught me more about myself and what life is really all about – love, compassion, tolerance, family – than I could have otherwise discovered and I am grateful for the experience. Very occasionally we experience sadness that the girls have Down syndrome but more often there is pride and joy. There is no point wishing things were different. Serenity comes from accepting things that cannot be changed and it’s best for all the family that we find peace. And we have. I don’t even notice that they have Downs anymore. To me, they are just The Divine Miss Em and Nicki Noo Noo! We have been down some roads and met some wonderful people we never would have if it weren’t for Emma and Nicki and generally people couldn’t be nicer. We’re aked some very strange questions at times but it makes us realise how little people know about Down Syndrome. Our children will go on to be mainstreamed into local schools so if you see Emma or Nicki in your child’s class, don’t be concerned, they are there to learn too. Just say Hi and give them a smile and you are sure to get a smile back that will light up your day.
I was shocked to say the least to find myself pregnant again with my 4th child at the age of 39. My husband and I married very young and had 3 sons ages 20,17,and 6 at the time. I was panicked and then the panick turned to joy after I got used to the idea of little pitter-patters once again in our home. My pregnancy was strange. During the 17th month of pregnancy, I feel that I almost lost the baby due to severe cramping with no show of blood. I only gained 14 lbs. throughout the whole pregnancy. That was abnormal for me, as I gain 35+ with my boys. My doctor kept telling me to stop making up things in my mind, and that all was well with me and my baby. At around 20 weeks I had my AFP which turned up 1/37 chances of having a baby with ds. My chances were 1/89 before the test due to my age. This scared me so bad that I couldn't sleep for 2 nights until I had my level 2 ultrasound. The ultrasound confirmed that I had a very healthy baby GIRL with no signs of ds. I cried tears of happiness at the news of having a baby girl. I took the information that they gave me and I ran with it. I didn't have an amnio, because w
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