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Off the Beaten Path: A Letter to Myself

Last year, almost to the day, you were standing in an empty aisle at a Fred Meyer's store, reaching up for the last umbrella stroller. You pulled it from the shelf and unfolded it, to be sure it worked. It was silver and blue and as you regarded it, there in the aisle, you felt like crying. Here was another detour in your life: buying a stroller for a 3-year-old child who had yet to take his first real steps.

The moments of hope came too, but hope seemed like such a small thing. Like Avery's progress. One step here, another there. Then arms lifted up toward you, asking to be carried. And you did carry him, until your back screamed in protest, your arms and legs so tired at the end of each day that you set the bottle of Ibuprofen next to the bedside as a matter of course, because you knew you'd need it when you woke in the middle of the night, stiff and sore.

You weren't alone. You had helpers. You had Tom, and Avery's brothers. You had Wendy, the physical therapist who'd pat your arm and tell you, "He will walk. In his own time." She said it in such a way that you believed it.

And you had Avery. Such a sweet boy, a careful boy. Quiet, watchful. The way he'd reach up to you, expectant. You will miss those hugs, I can tell you this truly. You were his sun and moon, in those days. You were his movement when his body couldn't move for itself.

I can tell you all this from the safety of where I stand. I've seen Avery walk, I've seen him climb and hop, I've seen him run. I've seen his face delight in fastness, in doing somersaults and trying to do handstands. I know you're shaking you head at the impossibility of it, but it's the way it is, now.

Avery shrugs and stomps his foot and waves you off, saying, "No, No," when you attempt to carry him. He prefers to do it himself. And only once in a while does he have time for hugs. Mostly, he's part of the blur of boys racing past you.

You don't realize it, but there will come a morning, ordinary like any other with one exception--it will be the last time Avery will crawl up into your bed and wake you with a kiss. You won't be able to remember that last morning; you'll just know that somehow, it stopped. Now, he piles out of bed and runs into the kitchen with Bennett and Carter and asks for juice and peanut butter toast, all smiles and giggles, giddy with the prospect of a new day.

Or, books. He won't be the child who snuggles with you on the couch anymore, pointing to the picture of a bird and saying, "Bird!" or an airplane, "Plane!" He'll become the boy who climbs up the back of the couch and perches on top, so that he can roll down and land in the cushions. "Avery!" you'll shout, more times than you can count, "be careful!"

I remember when Avery was a tiny baby, wrapped in the blue and white striped blanket with the little frogs on it, and you'd read the growth and development charts for babies with Down syndrome. I remember how you thought he'd be the first, the fastest, the best.

I remember too, with each of the passing months, how you let go of those thoughts, and how you instead began joking that you were setting a new world record for latest-walking. Making jokes took the sting away, when people asked about Avery.

But it was the only thing you wished for. Every time you picked up a lucky penny, every birthday candle blown out, every four-leaf clover or double rainbow was the same wish: Please let Avery walk.

You wanted Avery to be free. Now he is. You joke again, about how maybe he's a little too free, and how you should have watched out for what you wished for. But the jokes come easily, because your wish came true, and you've already moved on.

It's easy to forget the struggle, but I don't want you to. I want you to see how you were never lost, though it sometimes felt like you were. Always, you were on the right path, even when you couldn't see it.

So I'm writing to you to ask that you remember. I want to remind you to follow Avery. Take it slow. Wake up and hold in your heart all the things you have, turning them over in your mind like the gifts that they are.

column added on 2008-03-30 :: ::

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Jennifer Graf Groneberg
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Jennifer Graf Groneberg lives and writes at the end of a twisty gravel road with her husband of fifteen years and their three sons. She maintains jennifergrafgroneberg.com, writes the blog Pinwheels, and a blog on ParentDish.

Jennifer's book Road Map to Holland about mothering her middle son Avery, a fraternal twin born with Down syndrome is due out April 2008, and is available for pre-order now.

Read more of Jennifer's Off the Beaten Path column.

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