People who have a bonus chromosome are often blessed with the ability to see Down syndrome desires plainly, without the filters of practicality, obstacles, or “impossibilities.”
Believe it or not, Down Syndrome Desires are not Much Different from Yours.
His first love was Makenzie. Like most people, he never completely got over his first love, though he is more honest about it than most. Maybe that honesty has something to do with his bonus chromosome and maybe it doesn’t. But since his first love, Jack has always wanted to get married. Over the past twenty years I have learned that Down syndrome desires are almost always the same as other people’s. Even so, people who have Down syndrome are often blessed with the ability to see those desires plainly, without the filters of practicality, obstacles, or “impossibilities.”
Down syndrome desires always come with supposed solutions to obstacles.
Jack was in elementary school when he fell head over heels for one of two identical twins that all but he and their mother had trouble telling apart. When we tried to redirect Jack’s attention by telling him that we thought Makenzie would be too sad to leave her twin sister and marry him, he didn’t see a problem. Down syndrome desires always come with supposed solutions to obstacles. The sister could come along, too. She could have her own bedroom in his and Makenzie’s home.
I had always planned to make a place for Jack in our family owned business but like many sons of business owning fathers with type A personalities, Jack wanted to go his own way. Down syndrome kept my son from concerns about how much money he could or should try to earn in a career. He chose his future the way that everyone should, and very few do. His choice of employment was based on what he wanted to do; what he knew he would love doing. My son either wanted to be a cashier or a bagger at the local small-town grocery store, where he could see and help all of his friends from the community. Fortunately, the business owner and the manager were all about fulfilling Down syndrome desires. They and the other workers at our local Food Town work with Jack to help him focus on the requirements of his job while making his dream a reality.
Down syndrome desires at my house include country music played at loud volumes.
Big red four wheel drive trucks get Jack excited just as much as they affect me. When I gave him his first ride in my new one, he told me that he was going to save his money from the grocery store and buy a big red truck of his own. In trying to be the best dad I can be to my son, I have learned to try to make Down syndrome desires as much of a reality as they can be while only placing limits where they absolutely need to exist. I told Jack that if he worked hard and saved his money, that I would help him to buy his truck, but he wouldn’t be able to drive it. He looked hurt when he asked me why. I explained that because it was hard for him to learn some things, I was afraid that he might hurt someone very badly if he tried to drive. I concluded by promising that either I or one of his brothers would take him for rides in his own truck. Jack contemplated for only a moment when he devised a compromise. “OK,” he said. “I won’t drive. But in MY truck, the stereo will go over here.” He then held up his hands showing an area where he would be in complete control of the music selected and the volume at which it was played. Down syndrome desires at my house include country music played at loud volumes. If Jack wasn’t adopted, I’d think he gets that from me.
To me, Jack was perfect. Would I change him if I could?
A couple of years ago there was a medical breakthrough. A doctor discovered a drug that over-rode the effects of Down syndrome in mice. Like most in the Down syndrome community, I was shocked. At first I was apprehensive. To me, Jack was perfect. Would I change him if I could? I didn’t need to contemplate long when I considered Down syndrome desires. Jack had already approached his mother on another occasion and I absolutely knew that he would want to be like everyone else. Huh… how much is that Down syndrome desire like the rest of ours?
It turns out that the current medical breakthrough only applies when the drug is administered to the mice within a day after they are born. Also, the drug has not yet been proven safe for humans. Until there are further advancements, there won’t be any changes or decisions regarding people who currently have a bonus chromosome. But I have a lot of faith in science (paradox intended). I believe that the day will come when Down syndrome will no longer be present in humans. And when that happens, I will be so happy for people like my son, Jack.
I will experience some sadness, too. I’ll lament the loss of Down syndrome desires that teach parents like me so much.
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