Monday, August 16, 2010

it's not whether you win or lose, it's how you play the game

I was chatting with a friend of mine last night who happens to have a child who used to have a trach. She made a comment to the effect of, "oh, our story is so ordinary compared to some people's"


That's right. She thinks of herself as an ordinary parent, with an ordinary kid, who just happened to have this little issue - it doesn't make her special, because it just was the way it was, and there was nothing else to do but keep walking.

And that's the thing. I think most of us special needs parents feel the same way - we're not something special, these children aren't given to us just because we're supermoms and superdads...they're given to us because they're children, and we are their parents.

The funny thing is, when she said all that, I stopped short. Because I think of her story as amazing, and I wonder all the time how she managed to make it all work out. I think that about a lot of the people we know - and while I could list them all here, I'd rather not, because these are their stories to tell:

Yes, Acorn has a trach...
but he'll eventually get it out, unlike many children.

Yes, Acorn came home with a ventilator...
but he isn't now, and we know people who will always need theirs.

Yes, Acorn's lungs weren't developed well enough to support his body...
but that's a problem that growing is fixing.
he's never had problems with his vocal cords
or needed surgery to reconstruct his trachea to keep it from collapsing
or needed surgery to move his facial bones around to make breathing on his own more managageable

Yes, Acorn has (had?) pulomonary hypertension...
but he never needed more medication than Viagra - the next step up is thousands of dollars a month
and he's never needed a catheterization to check for pressures

Yes, Acorn had holes in his heart - a PDA (which was closed surgically), and an ASD (which healed), and a VSD (which is minor and intermittent these days)...
but about 1 in 100 babies - maybe more - is also born with a congential heart defect,
and some of them die before anyone knows it's there
and others need multiple surgeries to get things working properly

Yes, Acorn was 100% g-tube fed for a while there...
but now he eats.
and drinks - from a bottle and a sippy cup
and will eventually not need his feeding tube

Yes, Acorn is a bit iffy about some textures and sounds, and yes, there are some SPD issues in our family that he might have inherited...
but he walks on grass
and eats tomatoes, in all their "mixed texture" goodness
and manages just fine in large crowds
and looks people in the eye, and interacts with them approrpriately

Yes, we're expecting a report from some tests that will tell us that Acorn has very mild Cerebral Palsy (which we've all suspected for months)...
but he walks
and runs
and colors (with both hands, if you push him)
and moves his tongue around in ways that make all his doctors and therapists believe that there's no reason to think he won't talk

Yes, Acorn spent a long time in the hospital...
but he came home.

I don't think, in the grand scheme of things, that we've had such a bad run of it. In the small picture, sure, there are points where I've been amazingly stressed and amazingly sad...but I think that's "ordinary" when you're a parent.

We're all ordinary people, and us special needs parents, no matter what the special need, are thrown into extraordinary circumstances. Each of us has a unique journey, but that doesn't mean we're alone. Special needs parenting isn't about numbers, it's about each of our individual children and their individual needs, and us parents keeping our sanity while we're walking this path.

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