The testimony I wrote for an adoption agency seminar, slightly updated:
For years, I've heard mothers say that their sons are 'all boy'. By this they usually mean that their sons like trucks, balls, or playing in the dirt. Maybe they like to wrestle and play rough. All of these are true of my son, Clive, but I have another reason for saying that Clive is 'all boy'. At the ripe old age of fourteen months, he somehow learned how to belch at will, and laughs his head off when he does it. If that's not stereotypically boy, I don't know what is. He also likes to jump on the bed, pull the cat's tail, and play in the dog's water bowl. In addition to these somewhat ornery activities, my Clive, whom we nick-named 'Trooper', loves to snuggle, blow kisses, stack blocks, explore the house, play baby games, go outside, visit friends, and show his favorite things to the many people who come to our house.
Trooper has a wonderful sense of humor and can be quite a ham. He's been known to make faces at the people behind me in church, and next thing I know, everyone behind me is snickering. His cheerfulness is downright contagious. He rarely cries. Nearly every morning when he wakes up, he calls out for us and then waits until we come to get him. As soon as one of us walks into his room, he will jump up to look out of the crib with a huge, excited smile on his face, and babble excitedly while we get his things together so we can get him out of bed.
I have never seen a child more filled with joy than our Trooper is. He is not even fifteen months old, and he has already learned to love life with passion. Since he came home to live with us, about six months ago, our home has overflowed with laughter and love for each other, for others, and for life. We felt that we were doing God's will when we decided to adopt a child with special needs, but we never could have predicted how much fun it would be.
Trooper has a condition called Congenital Central Hypoventilation Syndrome. The main result of this syndrome is that his brainstem does not monitor the oxygen or carbon dioxide levels in his blood, which essentially means that he doesn't automatically know when he needs to breathe. Because of this, he is ventilator dependent. When he first came home, at eight months old, he was on the ventilator for about twenty-three hours a day. Since then, he has gotten strong enough that he only needs it when he is sleeping or not feeling well, but because of his condition he will ALWAYS need to be ventilated when he is sleeping. It took a while for doctors to figure out what was wrong with him after he was born, but they then did a tracheotomy so that he can be ventilated in the most comfortable way possible for a child. Trooper also has Hirshsprungs disease, which required a colostomy. Next summer, we plan to have the colostomy reversed so that he won't have to grow up with a colostomy bag and all that is associated with it. (He has since had his surgery. So glad that's over!)
There are some people who think it would have been better if Trooper had never been born. They would probably cite the hundreds of thousands of dollars it has cost to keep Trooper alive and healthy, not to mention the fact that it is simply more difficult, in some ways, at least, to care for a child with Trooper's needs. My husband and I had to receive a lot of training in the hospital, and even now we have nurses who watch over Trooper while we all sleep. Wherever we go, we have to pack a large load of ventilator and associated equipment, along with the 'normal' baby stuff. I have wondered if Trooper's biological mother would have still chosen to give birth to him, had she known what his condition would be. Just thinking about it is enough to make my throat tighten and my eyes start to itch. I am so, so thankful that she chose to give him life, regardless of what she knew about him. Trooper has brightened his corner of the world, and I know that he will continue to do so. His life can't be measured in dollars or trips to the pulmonologist.
Some people say that my husband and I are heroic, that it's so good of us to have adopted a child with a condition that might have been overwhelming to someone else. While I can understand what those people are trying to say, I have to say that they are wrong. Is Trooper blessed to be in a home with parents and friends who love him? Of course he is, but he's no more blessed than we are. He doesn't need us any more than we need him. And it's not just us; Trooper, along with his amazing accomplishments and super personality, has been inspiring people for longer than we have known him. He has a fan club wherever he goes. In fact, I remember one of my friends leaning over to me and saying, "I think Trooper has achieved Rock Star status."
Life with Trooper has instilled in me the knowledge that people are not their disabilities. Intellectually I had known that for a long time, but now it is part of my very world view. When you reduce people to their syndromes, or analyze their value based upon their a-typical parts, whatever they may be, you forget about their spirits, their personalities, and the joy they can bring into the world. In spite of his syndrome, Trooper reminds me every day that life is beautiful and so worth living. He reminds me that the world is full of mysteries waiting to be discovered, and also that it is full of wonderful people who will allow themselves to be inspired by a tiny child.
I don't know what Trooper will become when he grows up. Right now, I'm guessing that he'll end up doing some kind of comedy or art, or perhaps he'll teach. Of course at his age it's impossible to have a good guess. Whatever he does, he will do it with enthusiasm because that's just how he is, and how he should be.