The Purple Wheelchair

By Suzanne Kamata

"I'd liek to order the purple one," I say, gesturing to a sample near the wall. It's a Convaid Cruiser with a harness and padded covers, retail value about $800 (though the Japanese government will pick up much of the bill). It looks more or less like an ordinary stroller. The color is vivid and cheerful.

Ms. Takubi, my daughter's physical therapist nods eagerly.

She knows, I think. She knows that I don't want a wheelchair that looks like a wheelchair.

"You can think about a more conventional-type in a few years," she says.

My smile droops a little. Does this mean that Lilia will never walk? Is the therapist revising her assessment of my three-year-old's possibilities?

Lilia first started coming to this center for therapy about a year and a half ago. My husband and I knew that there was something wrong with her legs, not surprising since she and her twin brother were born fourteen weeks ahead of schedule. Lilia weighed only 672 grams at birth, which is small even for a 26-week-old baby. Her brother, Jio, tipped the scales at 920 grams.

While our son's development followed the charts, he quickly caught up to his peers in height and weight, and was walking at fourteen months, Lilia's progress was much slower. At 18 months, her head still wobbled and she could only sit up with support.

Various professionals, including the neo-natal specialist, assured me that her development was simply delayed. Others, including my parents, hinted that there might be a deeper problem. Finally, at the suggestion of Lilia's pediatrician, we took her to a facility for the education and care of physically disabled children. We'd already learned that Lilia was deaf, something that I was still coming to terms with. "Muliply-disabled," would take some getting used to.

After an examination lasting only several minutes, the doctor wrote, "suspected cerebral palsy" and prescribed therapy sessions twice a week. During the first session, I asked Ms. Takubi if she thought that my daughter would one day be able to walk. She told me that it would depend upon Lilia's motivation, among other things, and gave her an 80 percent possibility of perambulation.

"Do you think she'll be walking by the time she's three?" I thought that I was allowing a generous margin, but Ms. Takubi cocked her head to one side and hummed.

"Hmmm."

For the first 18 months of Lilia's life, she was, according to doctor's orders, sequestered from germs. Our house was a fortress, meant to keep out friends and family with a hint of a cold. When my mother-in-law showed up on Christmas Eve bearing gifts and a runny nose, I quickly scooped up the stuffed animals and sent her on her way.

We didn't go to restaurants, weddings, libraries, coffee klatches, supermarkets, or playgroups. When I took my twins strolling, I veered clear of the grannies who were sure to lean down and poke their fat baby cheeks. In this way, I kept my children healthy.

But when we started going to the deaf school's early intervention program and to Hinomine for physical therapy, Lilia began to get sick. Because of her insufficiently-developed lungs (a result of prematurity), a common cold quickly turned into bronchitis or worse. One day, a tiny trickle of mucus would come from her nose, the next, she'd be in the ICU hooked up to a respirator.

Over the next 18 months, Lilia was hospitalized eight times. The six times that she was admitted to the ICU, she was sedated to better endure the discomfort of the breathing tube down her throat. Because she was inert for days, and even weeks at a time, she emerged unable to sit up. Again and again, we had to work toward the same goal.

A few months ago, Lilia turned a corner. It's been almost a year since she was hospitalized for respiratory problems. She no longer takes any kind of medicine. She crawls as fast as she can walk and can stand while holding onto something. A month shy of her fourth birthday, she can climb the ladder of the bunk bed she shares with her brother, and hoist herself into the upper bed.

Lilia has the energy of the Hoover Dam. She's the Shackleton of my kitchen cabinets, a bright and funny child who loves to wear pants on her head. It is hard for me to imagine my extremely mobile child in a wheelchair.

And so, although Lilia is thrilled by a test spin in the sample wheelchair (the conventional kind with big silver wheels) and Ms. Takubi suggests that it might be easier to push, I insist on the purple stroller-type.

I wonder if this makes me like those mothers who take out their children's hearing aids in public so they won't be pegged as deaf by strangers, or the guy in a story I read who opted for surgery to "correct" the eyes and ears of his Down Syndrome daughter.

Is it selfish of me to hope that Lilia will one day run through the halls like those other children we've seen graduate from physical therapy? Can't I dream that the purple stroller will be sufficient, at least until I am ready to embrace the image of Lilia racing down the street in a wheelchair, laughing as she goes?

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Copyright 2003 Suzanne Kamata