A Long Walk with Wheels

People stare at him because of his walker. They can’t help themselves. They crane their neck as they drive past. They stop walking. They stand in their windows and watch the little boy roll by.

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.

1% huh?

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.

Comments

[Christy]

Nana and Papa wrote:
We miss Elias' daily adventures using his walker but we are somewhat more rested since we aren't chasing him and preventing him from going down overly steep hills and into big "dips". We also miss Elias' parents!
7/18/2007 12:44 PM CDT

UncleAndrew wrote:
Can't wait to see you here in Seattle Thursday night. Tess is excited to see cousin "B'Elias" as she calls him for some reason. Then again. her mom is also "B'Elise"
7/18/2007 6:43 PM CDT

Niksmother wrote:
God Bless that woman with the walker! That made me teary. In a good way. I followed your "road trip"posts on your old blog. You give me so much hope that one day, when we can travel without the need for easy access to pediatric hospitals, Nik, Niksdad, and I can embark on our own grand adventure. Meanwhile, the thrill may have been vicarious but it was no less real!
7/19/2007 7:48 PM CDT

Following Elias wrote:
I'm in Seattle now with Andrew and Tess--"yeah Tesaroo" Elias says.

Niksmother, I hope you get the chance to escape the hospital-leash too some day. As we begin the drive North, back home to AK, my head is starting to try to schedule his therapy appointments for the fall, and though it will be great to see his therapists I'm not looking forward to the hectic schedule.

And mom and dad, Elias still talks about both of you every day.