Following Elias

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.

In the Beginning

“Where’s my baby?’ I ask the woman with kind brown eyes who sits beside me when I wake from the anesthesia.

“He ‘s next door in the newborn intensive care unit.” Dr Parish answers, never taking her eyes off mine.

“Is he ok?” I ask.

“He’s alive but I can’t tell you if he’s going to survive.” The word alive brings relief to my morphine haze confused by images and sounds: I see his foot. His heart rates dropping. Urgent strangers in scrubs. We need to do a c-section now. Your doctor's on his way. Nick’s face as they wheeled me away from him. The tremble of my legs. We need to put you to sleep. Dr Isada’s face. Relief. He’s here.  Nothing.

“Where’s Nick?” I ask the woman by my side. 

“He’s with the baby. Would you like me to get him?”

 I nod and say, “Please.” And in the quiet that follows I cling to her first two words, as I close my eyes to rest.

When the door opens I look up to see my husband’s ashen face. I see terror in his bloodshot eyes and the second part of the doctor’s statement becomes clear.

I can’t tell you he’s going to survive.

**********

In the beginning.

We wanted Elias to wait. I lay on my side in our hand-me-down bed and stroked my softly rounded stomach, not yet swollen, not yet full.  Stay in, stay up, stay in, stay up, I repeated as a mantra, as a prayer, as a beckoning to my body and the child within to be patient.

To wait.

Only allowed to leave the house for weekly ultra sounds, only allowed to stand to pee, placed on strict bed-rest at eighteen weeks, I felt the weight of pregnancy too early, too soon. I craved sunlight and slept restlessly, dreaming I needed to be somewhere, only to wake to the realization that I had nowhere to be. Besides bed.  With orgasms off limits. Not to mention dancing, walking, standing, laughing to extremes.

It snowed three feet the weekend we canceled our Christmas flights from Anchorage to Oregon to see Nick’s family. The roof leaked and water dripped through the ceiling as I called the school where I taught to quit my job. As Nick shoveled off the roof and used his climbing axe to break through the ice, I made phone calls to remove myself from my prior life.

Nick built me a bedside table on wheels and left me snacks in a cooler before leaving in the morning for work.  I lay visualizing my tiny son asking, pleading, bargaining: stay in stay up. To please stop pressing his head into my cervix and for this stretching doorway to the outer world to say shut.

I counted the days like a prisoner doing time for the crime of a woman with two wombs-- each half the size of a regular uterus and Elias planted in the smaller of the two. My body held me captive; a contradiction for it to be still.
 
Ever since my first annual, at age 17, doctors said my body made me likely to miscarry,--the word alone fueled with blame: miss carry-- but they also told me stories of other women with two uteri who delivered healthy children, naturally, and carried them to term.

And naturally, I thought that would be me.

As I moved from Connecticut to Vermont to Maine to New Hampshire, back to Maine, and finally Alaska, I talked to countless doctors, midwives, and naturopaths, all who spoke of either miscarriage or healthy children.  Not one ever mentioned a premature baby, an infant alive but not healthy.

As I sprawled on the bed, counting the days, stroking my belly, saying my mantra, I wavered between images of death and vigor. I didn’t prepare for the cusp of viability that falls between these extremes.

**********

“Can I see him?” I ask Dr Parish.

She nods and the NICU night staff moves tables and chairs so they can roll me, bed and all, through the over-crowed unit, the only level three in the state, to where Elias lays. Tubes and wires everywhere. Tiny. Red. Wrinkled. Alarms blaring.  Eyes fused shut.

He doesn’t look like the baby I visualized during my six weeks of bed-rest. With one hand by my belly, I ask, “Can I touch him?”

Someone tells me I can.

I reach up towards his tiny splayed hand, placing my finger in his palm.  He grips my finger and squeezes, brief but strong, a flicker of light, a pulse, a kiss. A beginning--that gives me the courage to wait.

--Excerpted from Following Elias, originally published on Parents.com. Copyright 2009 by Meredith Corporation. All rights reserved. Reprinted with permission.