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Wednesday, July 21, 2010

I would like to share with you stories about the lives of children with Down Syndrome and their families.

Our Down Syndrome Story begins here...

Sam has Down Syndrome. His "story" began before he was even conceived. In March of 2001 we were expecting our 7th child. I still remember the call we received from the doctor's office telling us that the AFP test came back positive for an increased risk of having a baby with Down Syndrome. They reassured me that this did not necessarily mean that the baby would have Down Syndrome, merely that there was an increased likelihood. We declined to have an amniocentesis (because of the risk of miscarriage) but did have an ultrasound during which the doctor found a thick translucency of the nuchal fold (a fold of skin at the back of the baby's neck). This is one of the telltale signs (they call it a "soft" sign) of a baby with Down Syndrome.


We were devastated. Me, have a retarded child?! No way. I told God there was no way I would be able to handle a baby with Down Syndrome. I begged and pleaded, we prayed. I was always uncomfortable around kids who were not exactly what society describes as "normal". Surely God would not give me one of "those" kids.

The Big Day

After 5 agonizing months (I did eventually get a book on Down Syndrome) we were blessed with a perfect little girl. God had answered our prayers. That Thanksgiving our thanks was for our "normal", which I have found to be a relative term, baby girl.

The Next Time Around

Fast forward to pregnancy number eight. No AFP test this time. I wasn't going to go through that again! At the 16 week ultrasound it was determined we were having a boy. The doc also saw just a little bit of enlargement of the openings in the kidneys. "It could be a sign of Down Syndrome", he informed us. I thought, "Oh no, here we go again." A few weeks later the ultrasound was repeated and everything looked perfectly normal. They told us, often when a baby's bladder gets full the renal openings dilate and that was probably what we saw. Phew, what a relief! Everything went smooth as silk. Finally on August 7th, at 36 weeks, my doctor decided it was time, Sam had not gained any weight in the past week. We chalked it up to my high blood pressure. At 7:00 pm that night the cesarean was started and 15 minutes later our screaming little guy made his debut. Not a thought about having a baby with Down Syndrome this time. Being that he was a bit early he was having trouble staying pink so finally they took him to the NICU, but not before his daddy got a chance to hold him.

The News

After what seemed like hours of cleaning and stitching and stapling, I was finally taken to the recovery room. There, in a cloud of morphine, I was given the news. My husband suspected Down Syndrome because of the shape of Sam's head and his eyes, the doctor told me, and when they examined him they felt the same.

It must have been the morphine, I just shrugged and said, "That's okay!" As long as he was healthy. The first time I saw him I knew! God had given me a baby with DS after all. Why? Was I too happy before when my little girl turned out not to have it? Was it because of my discomfort around kids who are "different"? (I have since come to realize that it does not matter why). I tried, successfully, to come across as positive and cheerful, but what I felt inside was despair. How would I deal with this? How would I cope with having a baby with Down Syndrome? It felt like the end of the world. Remember, I was afraid of those who are not deemed "normal" by society.

Be Careful What You Wish For

Sam spent eleven days in the NICU before we got to bring him home. We really didn't bond much during his stay there. Oh sure, I held him, rocked him, fed him, but being a nurse whose specialty is babies and their moms after delivery I was too busy obsessing about his progress and medications and were they doing things right... (Oh the joys of having a nurse for a patient!) So it wasn't until he came home that I totally and completely fell in love with him! He was the sweetest and best baby I ever had (sorry kids!). He slept through the night from the day we brought him home. He is always so good natured (sure he does have a temper, but it never lasts long), he soon learned how to smile and even roll over. Still, I think I was in denial. I would think, "See he's normal, he rolled over so much earlier than most normal kids even." I decided that he must have the physical features of a baby with down syndrome without the "retardation" (even though I really knew better). I still wonder sometimes though. He is a very clever little guy. Yes, I can see his progress is a bit slower than the others. He is one now and not yet pulling up, or cruising along the furniture yet, but that's okay. I always wished that they didn't grow up quite so fast. Be careful what you wish for................

Time Flies

Continuing our story about Down Syndrome...

Sammy is now 2 and 1/2. Time has flown. We have been very busy with therapies, a couple of minor surgeries (tubes in his ears, and a cleft palate repair). Both of which went very well.

Yes, it is different having a baby with Down Syndrome, but it is not at all bad. You learn to appreciate and celebrate each accomplishment. It is such a joy to watch him grow and learn, to watch his personality unfold. I do get stressed at times about all the things I should be teaching him and doing with him so that he will reach his full potential, but stressing about it won't do any of us any good. So we have learned to "go with the flow". If we work with him that day, great, if not, well, there's always tomorrow.

At this point I can not imagine a life without him. He is like a ray of sunshine! THIS Thanksgiving we will be thanking God for giving us a baby WITH Down Syndrome. Remember, this is coming from someone who has seven "normal" kids! Just yesterday a couple of the kids were discussing the sanity of some of their siblings and deduced that Sam, may actually be the only sane one of the bunch!

November 2006

It has been a year since my last entry. Sam has changed so much. He is going to (PPCD) preschool now (look for a section on preschool and IEP's coming within the next couple of weeks), riding the bus, using a lot of signs to communicate his needs/wants, and beginning to use some recognizable words. Having him in school three hours a day is great, but he has picked up some "bugs". Since school started in August he has had two colds already. In itself that is not such a big deal, but he is always so miserable and they have both lasted more than a week.

He is still a ray of sunshine, but he certainly has his thunderous moments. He is truly going through the terrible twos, even though he's already three. Just let one of his siblings try to take something away from him! Better watch out because though he does not have the vocabulary to tell us he's angry he can sure vocalize his feelings. His voice box is in perfect working condition!!!

He has developed some other bad habits too. One of them is our fault I'm sure...He loooooves Dr. Pepper! If there is a bottle of DP anywhere in sight he will refuse to drink anything else. If he sees us going for the milk jug, or something else, he will vehemently shake his head "no". So we pretend not to notice and give him the milk or juice or whatever anyways. That cup will not sit in front of him for more than a second. Luckily he only pushes it across the table. I guess he could be worse and he could throw it like he does everything else.

The teeth grinding is driving us all to madness though, like fingernails on a chalkboard. Sam just loves to grind his teeth. I'm worried he is going to wear them out before we even get him back to the dentist.

On the other hand, Sam gives the biggest and best hugs. Whenever his little niece come over he holds out his arms for her. “ Must have a hug before we can play.” Luckily she does not have a problem hugging him right back! His affectionate nature is such a blessing to us. He is such a blessing to us and everyone he comes in contact with. He is rarely a" terrible tot" outside the house so everyone just loves him. I guess he saves that terribleness for us!


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