6.15.2012

friday faves - missing pieces

When you have a disabled child (especially one with intractable epilepsy who has to take tons of powerful drugs) every day—perhaps many, many times a day—you notice something that should be there isn’t. Like the conundrum of the missing sock that never turns up. But of course, it’s not at all like a missing sock.

Sometimes it’s subtle, like noticing that your dog understands simple questions and commands, but your eight-year-old doesn’t—or does but can’t comply—because something’s missing.

Perhaps during a visit to the Frosty Freeze you realize that you, your husband and even your dog can enjoy a delicious scoop of ice cream but that your son can't. It's because he is either on some crazy diet for epilepsy that no one else in their right mind would willingly try except diet-fanatic adults or because he doesn't know how to lick the cone or because you're afraid of what spikes in blood sugar level will do to trigger seizures.

Or, a simple stroll down the block headed to the playground becomes a major struggle just to get your child to walk hand in hand with you—and straight—while persuading him not to sit down in the middle of the sidewalk every few steps. You only get past two houses on the block before you must abort the mission.

Often you hear kids passing by chattering with their parents about their friends or the weather or the new scooter they want to get and it reminds you of how you have absolutely no idea what goes on in your own kid’s head—ever.

And when you see your child’s development slow like molasses you understand that what is missing is a significant and important part of their brain. Somehow it just went missing, or perhaps it was never there in the first place. No one knows.

But then there are times when everything comes into focus (except the damn camera) when your sweet goofy little kid, like no other kid in the world by a long shot, looks you right in the eyes—something he rarely does—leans into you with outstretched arms from the other side of the high chair tray and pulls you in close, kneads the skin at the nape of your neck with little fingers, giggles and smiles and won't let go. That’s when it feels like there is nothing missing at all.

Version originally published 5.23.11

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Give to cure epilepsy: http://www.calvinscure.com

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