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Off the Beaten Path: One Step at a Time

"Is he walking yet?"

It's an innocent question, one I'm asked often by friends, relatives, Avery's therapists. Either he is, or he isn't, right? But it's not that simple.

"Sort of," is the answer I usually give.

I remember when I was a new mother to Avery, I read the growth and development charts adjusted for children with Down syndrome. In my mind, I put Avery at the top of the class. He would do everything early for a child with Down syndrome, which as it happens, is very close to the ages typically developing children do things. Without even realizing it, I was willing Avery to be "normal."

But Avery had his own path in mind, right from the start. He had an abundance of contentment, as if it never occurred to him to question what might be on the other side of the room, or down the hall. He taught himself to sit, and then he stopped, satisfied with this accomplishment, desiring nothing more.

We began physical therapy with a cheerful woman named Wendy, who rolled Avery around on a big blue exercise ball to build his core body strength. We swung him on a platform suspended from chains attached to a ceiling beam, to help organize his vestibular system. We supported his bouncing on a child-sized trampoline. We swam through a pit of red and blue and yellow plastic balls. The crawling came, and again, Avery stopped, as if saying, Good enough!

By the summer Avery turned three, it was clear to me that my original plan for him was not coming true. I had to admit that we weren't where I'd hoped. I found myself in the half-remodeled baby section of a Fred Meyer, alone in the empty, wide aisle, reaching up onto a metal shelf, lifting down an umbrella stroller.

Previously, we'd managed without. When the twins were babies, we'd used an InStep double jogger stroller, until Bennett outgrew it and then we carried Avery in a backpack, or held him. But at thirty-two pounds, he was getting too big. Even when he tried to walk, he'd tire quickly, like any beginner. So this is where we were—he needed it. And this is what mamas do: they get their children what they need.

It was a defining moment; in pulling the stroller off the shelf, I let go of what I'd been holding onto for thirty-six months—the idea that the Down syndrome wouldn't matter; or rather, that it might matter to other people, but not to us. I was wrong—it mattered very much, but not for the reasons I might have first guessed.

Being Avery's mama has taught me to look at the things we can do. The ways we are able. A friend who is mother to a son a few years older than Avery once told me to keep my eye on the ings . By this, she meant the things we accomplish every day: growing, learning, progressing. As long as we're in the ings , she reminded me, we are okay. The thought applies to all my children, and to me. To her ing list, I've added three more—laughing, loving, living.

Another friend, who is a doctor, told me to put away the developmental charts. He explained they were diagnostic; meaning their purpose was to help reveal a problem, so that its origin could be found. With Avery, we already knew the cause. We knew the root. This thought had never occurred to me—that I could simply stop comparing.

My friend's advice gave me permission to see all my children clearly, in relationship to no one other than themselves. And to look at myself that way, too. In my mind, this great revelation was followed by a dramatic crumpling-up of the unwieldy developmental charts, tossed in the trash. (It didn't really happen that way; it was more like closing a book and putting it away on the shelf, but I like the drama of my imagined version. It felt as if something broken had been thrown out.)

* * *

Avery's walking is like the tide coming in, or going out. You know it's happening, but it occurs so gradually that you don't notice it. He takes steps in secret, when no one's watching. He'll be by the couch one moment, and then at the window the next. Or he'll stand, take a few steps, and then clap for himself so hard that he tips over, the sound of his cheering my only clue that anything has happened.

Avery's delay is genetic—part of it is Down syndrome, and part of it is temperament. Avery is the child who likes to cuddle, the child who likes to read, the child who will study your face in quiet contemplation. He's his mother's child, who has fallen down enough to realize that every step is taken in defiance—of the slippery wood floor, of the rocky trail, of the simple truth of gravity.

Avery's the last of my children to walk away from me, which makes it all the more bittersweet. Some days, I think, What's the rush? Where are we going, that we have to get there so fast? I think of roots, of what it means to be grounded. And yet. Walking means freedom. I want Avery to be free.

I grew up near the Pacific ocean. Some days, I wished we lived there now. Avery would learn, on a beach. The sand is soft. It's a good place to fall. His legs would grow strong. We could watch the crash and tumble of the waves. They fall, then rise, over and over again. The sand is forgiving. We could watch the seagulls, busy flying in great circles. At the beach, there's so much to do and see that you wouldn't even notice you were not walking, until suddenly you are.

column added on 2007-04-28 :: ::

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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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