Wednesday, March 14, 2012

My Bug in a Boy Suit, My Perfect Person, the Best Human I've Ever Known

Yep. That's him. My son, Andy. That's one of his senior year pictures, and the title of this post has been my tag-line for him since he was a baby. I've given him tons of nicknames in the twenty-one years he's been around: palooka-butt, monster, bother-boy, stealer-of-things-that-are-not-yours (like my Rolling Stone and Glamor magazines) and others. For some reason, "bug" seems to be universal for him. He's been called that by teachers for years. His data book at his developmental therapy program is labeled "Andy Bug." To me, he IS a perfect person and he certainly is the best human I've ever known. But it's not because he has Down syndrome. It's just because that's what he is to me.

Look, I'm his mother, so of course I think these things about him. The fact that they're true is beside the point. The point is that I never started giving him these nick names in order to excuse his disability or explain him away. My son has an extra chromosome. Period. He is not an angel sent from above to teach anyone anything. He is not a martyr, he is not any deity's precious gift. I was not chosen to be his mother because of any special attributes I may or may not have. He is not a punishment, curse or blessing any more than any other child.

Somewhere along the line, probably during my mitosis, there was a mis-copy. Not a mistake. A mis-copy. What this means is that when I was conceived and all my cells were splitting and making up all the zillions of parts of what would become me, at least one of the cells that became one of my eggs got an extra chromosome attached to it. That egg became half of Andy. That's it. And twenty-one years later, this is what he looks like.

There's no halo. He doesn't have wings and he's not surrounded by golden light. He's just a guy with an extra "y" and to try and make his existence into something more than that is demeaning to him. There's nothing "wrong" with him and there's no need to try and find a way to justify his existence.There's no more glory in Down syndrome than there is in having attached ear lobes or being able to roll your tongue.

There's been an awful lot of discussion lately about people like my son and this is just something I needed to say.


  1. Totally disagree about the angel part. We don't get to decide who is an angel and who isn't. He may very well be an angel or perhaps the angel is the one who sent him to save your life. Either way, the angel part stands. Keep on being so amazing, Kim!

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