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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
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