Thinking about Down syndrome

I’ll be frank. Even thought Amelia has Mosaic Down syndrome (MDS), I don’t think about it a lot. That took a long time, it’s true, but I’m very settled with it.

Only every now and then, a little something crops up that makes me think of it.  Yesterday,  found this little nugget:

From “The Change-Up”, from Universal Pictures

Mitch Planko (Ryan Reynolds), about his friend’s twin babies: “Why aren’t they talking? Are they retarded? This one looks a little Downsy.”

Fantastic.   Just when we think we’ve made some action on the “R” word, Hollywood comes around yet again pandering to the lowest common denominator.  (Who are they writing for, exactly?)

Naturally, I thought about this, because at times the description and forecast for MDS can sound like she’s “a little Downsy”.  (Oh, it gives me the creeps just to freakin’ write that.)  I spent years doing a bit of research on MDS compared to the more common form of Down syndrome, and my conclusion a long time ago was this: “Down syndrome is Down syndrome.”  Maybe that’s why that joke stings a little more than I thought it would, or maybe it’s just that it’s such a cheap shot for a crappy joke. Maybe both.

So last night I wandered into Amelia’s room, you know, to tuck her in properly and say a prayer over her, and I took a long hard look at her.  With MDS, kids don’t always look like they have Down syndrome…certainly at first, Amelia did not. And though my dear husband 100% disagrees with this, more and more I see it too.

The thing is, I no longer care.

Really.  What difference does it make if we can see it? It is part of who she is, and naturally, that led me to the next thought:

Would I change it if I could?

I battled with that idea night and day when she was first born, on again and off again over the years.  It’s been a while since that thought graced my brain.  I know, too, that I bookmark articles on Down syndrome research, in terms of improving brain functioning, and that I’ve got to take some time to work on a biomedical plan for Amelia to improve the typically-affected issues that kids with Down’s have, like math and attention span.  I am proud of her when she acts or behaves like the typically developing kids around her, and some times stuff down the worry when she doesn’t. That doesn’t make me a bad mom, but it certainly means I’m more human than I care to admit.

If God lit down before me, and said, “Gina, right now, I will turn back time, fix that chromosonal split, and make Amelia not have Down syndrome if you want Me to…but it’s your choice.”  Would I do it?

No. I would not.  I have no illusions. I know that this crazy idea would erase the Amelia I know and love, and put a stranger in her place. Amelia has taught me too much to reduce her value to a “condition”. She has taught me that in God’s world, there is no “least of” when it comes to being a person. All of God’s beautiful creations have something to share, to offer, insight and inspiration and wisdom that is there for anyone who looks.  Yes, I’ve come to a good place, where I can think about Down syndrome and not let it bother me in the least.

And maybe, one day, I’ll get there with autism too. What a long way I still have to go.