October 5, 2007

4 months ago our second son, Andrew, was born- small and sweet. We found out about two weeks after he arrived that he has a chromosomal deletion called Cri Du Chat. It's a devastating diagnosis- kind of an unhappy mixture of autism and down syndrome. My sister, Peggy, has a child with spina bifida and has been in the special needs world for 14 years. Just watching her, I've always known it was a club I didn't want to join. However, I think I always thought that if I did have to deal with something like this, I would do ok. Now, I'm not so sure. People are always so sugary sweet about their roles as special needs parents. They never expose their darker feelings, probably because they're afraid of what people will think of them. However, I don't see a point in living some rosy lie. I love my kid, but I absolutely hate the fact that he has this. My very being rebels against the idea of what he may become as the years pass. I can't stand the idea of his sweet little face being twisted into a sharp abstract as he gets older. I don't want to think about him living in a group home because he is unable to care for himself. After his bath each night, I give him a massage and I pray over each part of him while I do it. "God, let his legs run and play. Let mind be able to think clearly. Let his tummy stay healthy and normal. Let his eyes close easily with sleep each night. Let his lungs stay clear of infection. Let his ears always hear. Let him be able to speak. Let his hands someday hold the hands of his wife and children." I know this makes me sound like a terribly spiritual person, but, truth be told, I am having a hard time believing that God will answer me. I just hope that the more I pray, the more I will believe. It's like C.S. Lewis said, " I don't pray because it changes God, I pray because it changes me." Of course, in this case, I hope to do both.

Today Andrew had an appointment with a new therapist who will see him in addition to his regular therapist, Jim. Whenever I see anyone new I always ask the same question, "How does he look to you?" Of course, most people have never seen or have rarely seen a child with Cri Du Chat. This therapist has seen a few in her career and, based on that, she was prepared for him to look a lot worse. She was actually pretty pleased with his muscle tone.

In addition to Cri Du Chat, Andrew has a hypoplastic corpus callosum, a thinning of the area of the brain that allows the hemispheres to communicate. This therapist, Stephanie, is going to come once a month to show me exercises that work that area of the brain. She feels if we can improve that communication, he should have no trouble walking. Also, she feels he has good cognitive abilities. He seems interested in what is going on around him and he brings his hands together at mid-line (at the center of his chest beneath his chin) and also puts them in his mouth.

I hold on tightly to whatever good reports I get, but it frustrates me that no one can give me an idea of what the future will hold or what we can expect for his development. I think that's the hardest part of all this. We are looking at years of unanswered questions and lots of therapy, praying for a payoff that might not ever happen. We just have to wait and see.