A Variant of Unknown Significance

swangThe Kid bounds up the stairs from the basement, followed close behind by his speech therapist. She enters the kitchen, shaking her head and grinning. “I can’t believe it,” she says.

A professional, and she can’t believe it. But isn’t that how miracles work?

We start talking about all he’s doing, seemingly overnight–four years and overnight–and because this is someone who knows him, I can say it: that none of the labels have ever quite fit, that pardon my humble and biased opinion but he transcends them. That it’s just starting now, but I can see glimpses down the road–that he will continue to surprise us all; that he has been made a certain way for a certain purpose and he will do amazing things.

You know. Just some thoughts.

She tells me with tears in her eyes that she has the chills, and I think about how being his advocate, it has been in moments of screaming and crying and holding him down, but it has also been in moments like this. He peeks at us around the corner, smiling as if he knows.

I think he might.

The call comes after five on a weekday afternoon, and when she tells me she’s from the genetics testing center, I scramble for a pen and paper, taken by surprise as I always am when it comes to him, and she speaks the words as I write them. Chromosomal deletion. Variant of unknown significance. We haven’t seen this exact thing before.

I’m getting used to hearing that last part.

There are people in white coats with microscopes and thick, heavy books–I’ve been one of them–and they have explanations and diagnoses and reasons. And sometimes they don’t. The various forms of shrugged shoulders that we’ve seen and heard–not determinable, further testing needed, it’s a mystery–these words are supplied as though the reason is hiding in a microscope or a book or on a chromosome, a deletion that explains what is diagnosable as a mistake.

I have to be polite, have to wait until I’ve left the office or hung up the phone, then laugh along with the unexplainably healed, with the blind who got their sight back. Because this may be a lot of things, but it is no mistake. A piece of genetic material missing, a deviation from typical on a sliver of chromosome, and I’m done chasing down reasons when I already have an Answer.

Grace adds what is needed and takes away what is not. He was made this way, love writing the code for each gene as surely as I type these words, and so much more beautifully: a masterpiece with a creator. This story, changing people. Changing me.

Unknown significance? Only because the story is still being told. Only because so much remains to be seen. But not because we’re waiting on a microscope. We’re watching a life unfurl.

Three Christmases ago, sleep-deprived and hormonally assaulted, I gazed at his tiny face, so full of possibility. Over the trio of years I’ve wondered if those possibilities had diminished. If our dreams had become limited, our hopes unfounded.

Nope.

This year I see that same face and watch the mouth painstakingly sound out letters and words. This is not easy for him. Few things worthwhile ever are–easy, I mean. But it’s happening, one step at a time, each of those steps drawn out so we can see them. So we can witness the miracle. We are beholding him: a gift. And it’s just so undeservedly beautiful, how it has all started between his birthday and Christmas, this advent of words…and yet, how it started so long ago, with the advent of a different Word, of another boy who didn’t fit in and to whom labels would not stick. Words coming together beyond our sight, letters chaining in darkness until the light arrives, slowly at first, then so brightly and abundantly it’s just everywhere: the cracking of night to let the variations in, scattering and joining in patterns beyond what I could have ever imagined.

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