It’s hard being an exhibit. Or the mother of one.
Sometimes I don’t mind the stares. I enjoy following around the center of attention. Sometimes I just want to hide.
When I walk with Elias, for the most part, I see curiosity mixed with warmth. He's little. He’s cute. People smile. But when he grows older, will the looks turn to disdain? And if so will I fight or flee?
Why do I live in a culture that marginalizes the weak, the sick, and the old?
“You know you probably represent about 1% of families with special needs kids who would do something like this,” Elias’s physical therapist said to us before we left Anchorage for our two month driving, biking, camping trip.
We’re lucky: Despite Elias’s multiple disabilities, he’s reasonably healthy. No longer on any medication, we can travel on roads without hospitals, pharmacies or cell service. All of Elias’s therapists and doctors—and the list is long-- supported our plans to drive to the lower 48, bike from Washington to Wyoming, return in the RV to Oregon, and then back in our truck to Anchorage.
Maybe it’s the wild spirit of Alaska that infects us, that tells us not to stop exploring just because a kid can’t see so well or stand without falling down.
Maybe it’s our own bullheadedness, refusing to replace dreams with appointments, opportunities with restrictions. Refusing to hide.
Or maybe it’s not about us at all, but due to Elias’s ability to adapt to new situations with ease, his love for car rides and throwing rocks into water. Maybe it’s because he’s just so damn easy, rarely complaining, rejoicing over outhouses, gas stations, and new campsites. Maybe this and not his Cerebral Palsy, Nystagmus, and Chronic Lung Disease, is what makes him different.
Elias and I just returned from a walk around the block on the quiet streets of his grandparents’ neighborhood in Grants Pass. Every driver that passed us stared. The pre-teen girl who walked across the street from us kept turning back to peek again. I’m the only one who noticed, self-conscious and aware, Elias just pointed out every sign, street and bush along the way, ranking them by size. “Huge bush,” he’d say in his deep gravelly voice he reserves for big things. Or ‘Yittle baby street,” in a soft high pitched voice for small.
On the sidewalk by Rogue Street, we met a woman with gray hair and a walker of her own. “We both have wheels,” she beamed and let Elias touch hers. He looked up at her face, something he doesn’t often do. He recognized a comrade. “I’ll race you,” she said. And he muscled his walker forward, but in the opposite direction of her home.
“He’s off,” I said.
“Isn’t it amazing what they can do these days for us to get around,” she said, with a wide smile, as I turned to chase Elias. I nodded and told her it was. Amazing.
When I caught up to Elias, I peeked back at her and watched her walk, slow but steady, down the same sidewalk, past the same trucks, signs and bushes.
I couldn’t help myself.
--Excerpted from Following Elias, originally published on Parents.com. Copyright 2009 by Meredith Corporation. All rights reserved. Reprinted with permission.