Down Syndrome, We Have 2 Words to Say to You


ds1 Dear Down syndrome,

My wife is sitting next to me, and she just stuck her tongue out at you. “So there,” she said. When I asked her what she was talking about, she said she was reading online and saw two wedding announcements from people with Down syndrome.

“So there,” indeed. In the shortest way possible, I suppose, that sums up how I’m starting to feel about you.

Now, I’ll be honest, that wasn’t always the case. When my wife and I first learned you were going to be a part of our life, part of our daughter, Maggie’s, life, we were in shock, then pretty upset and even scared. Rather quickly, however, through the help of groups like the Massachusetts Down Syndrome Congress, we started to understand that you really weren’t all that scary. Turns out our apprehension was based more on our lack of knowledge – a good ol’ fear-of-the-unknown type deal – and not in the realities of what you are. So there.

I’ll bet as you’re reading this, you’re thinking something like, “But I’m different! I’m a force to be reckoned with! I’m in your daughter’s genes, you can’t get away from me!” Well, guess what, her beautiful blue eyes are also in her genes. And so are the infinite other characteristics that make her who she is. So far that combination seems pretty wonderful. As far as I can tell, you’re just another member of the cast that makes up the Maggie Show. Yeah, sure, you may be in more scenes than some of the other characters because you do have, admittedly, some kind of effect on pretty much everything, but in truth your role is pretty minor. So there.

What’s that you say? That you are a “disability” and so you matter? OK, maybe in some legal definition of the word, yes, you are a disability; fine, I’ll grant you that. In truth, I really don’t see you in that light – first of all, why do you have to be so negative all the time? What I mean is, I don’t see you as disabling Maggie; I see you more as differently enabling her. Sure, it may take her a little longer and require a little bit more work to learn things than others, but she can learn them all the same.

ds2 Her smile has managed to break down even the most hardened of people in ways I didn’t know were possible, whether it’s the old grump in the parking lot at the grocery store or the smarter-than-thou hipster at the coffee shop. I’ve seen smiles from people I’ve known for almost all my life that I didn’t know they had. If you want to call that a “disability,” then bring it on.

Sure, your hanging around with us means we have to do certain things other families might not have to, but you know what? It’s kind of fun because when Maggie gets it, whatever that particular “it” is, it’s a moment of celebration, of pure joy and that makes it worth it — not only for her in terms of her growing as a person but also because it’s a reminder that we should always appreciate even the littlest of life’s triumphs. Show me a family that doesn’t have things to deal with, and I’ll show you a family that’s probably either oblivious or in denial about their world. My point is, we all have stuff in our lives, and your stuff really ain’t all that bad. So there.

Do we have worries about her future? Of course we do. But here’s the thing – they aren’t really born out of your presence; they’re born out of the mere fact that we’re parents. We talk about our concerns over the first time she goes to school, or (gulp!) likes a boy, and how you play into that. After a minute or two, however, we realize you probably play far less a role in that particular scene than the fact that she has beautiful blue eyes.

In the end, I’m not trying to say you’re not there or that you don’t matter. What I’m trying to say is that as I get to know you better, you don’t seem to matter as much as I thought I you would, and really, from my family’s experience thus far, you’re not such a bad dude after all.

So there.

Sincerely yours,

James

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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