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Personal Stories

Hughes

1/30/2000

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Tulsa, Oklahoma
Because of my age, 39 at the time, I was offered the choice of having an amniocentesis. Since I had one done my previous pregnancy, I didn’t think too much about it. My husband and I were not concerned about there being anything being wrong but thought it a good idea to make sure and find out the sex of the baby. Before we even did it, the genetic counselor talked to us about the possibilities of trisomy 21 and even more rare and highly unlikely mosaicism.
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When we received the news I was about five months pregnant. Our child had 50% trisomy 21 cells, and was a baby boy. We were devastated. We grieved for the child that we thought we had lost. My husband was distressed about how the child would be treated as he grew up. I grieved for myself. How would I deal with a retarded child? Would he require so much attention that I would neglect my other four children? Would I be able to communicate with him? How long would he take to be potty trained?

I do regret one thing, ever having doubted my child and my Father in Heaven. Ben was born January 15, 1999. And so far has been healthy in every respect. He turned one year a couple of weeks ago and has just had his first ear infection. He is in the tenth percentile as far as growth and weighs 19lbs. My younger daughter was also petite so I’m not real concerned about it. He crawls by pushing up with his arms and then dropping down his arms and kicking out his legs (kind of like a seal). He gets around really fast that way and has been doing it since about six months. I have seen him crawl right to left but prefers the seal crawl. He pulls up to furniture and pulls everything off of the tables. He sticks everything in his mouth, but is not getting selective about what he keeps there. He has a killer smile and melts anyone he looks at.

My first reaction was that I did not want to be the parent of a special child, but now I realize that I would be the one to lose if I were not. How blessed I am! The first time I held Ben, I realized what a fool I had been and much time I had wasted wishing for things I thought I wanted. Ben is a joy. He has a kind of a calming effect whenever you hold him. If you are sad, he makes you happy. He is a comfort to my family and me. If there was a magic potion that would give Ben all normal cells sure I would want it because Downs is something he has, not something he his, but I wouldn’t trade him for any other child. My husband and I joke that it took us five tries to get it right. To us he is perfect.

I am glad I had the amniocentesis done. It gave us time to prepare and look into help for him. In Oklahoma we have something called Sooner Start for developmentally delayed children or children at risk for delays. They come to check on him every other week to make sure he is on track and so far so good. He is starting a class twice a week for kids with disabilities. I don’t know that he has any, but I want him to have as much early intervention as possible so that he can realize his full potential. I don’t know that he is retarded and will not for several years. As a teacher, I have seen children with low IQs that have no nurturing environment. IQs of 80 and below are considered mentally retarded. Many Downs kids have IQs well above that. They are not retarded! Whatever the outcome, I am grateful for Ben and thank my Heavenly Father for allowing me to be the mother of such a wonderful, sweet child.

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