The Towering Courage of a Disabled Child

My heart jumps and I can’t hold back a scream as Celia lets go of the wall, lifts one foot, then the other, before collapsing into my arms. “You did it!”

Never mind the plastic and metal braces encasing her legs. Never mind that she is 2 1/2, more than twice the age of most kids taking that first step. Right now I see a beaming toddler reaching a developmental milestone, a feat I once thought impossible.

“She has spina bifida,” the pediatrician said at her birth. It was the first thing I knew about her, before I even saw her. And then I tumbled into a world I knew nothing about--a world of hospitals, doctors, therapists and orthotists, who make the braces that help her get around.

They called her condition myelomeningocele, a mouthful describing the most severe form of spina bifida. The cause still eludes scientists. Sometime around Day 28 of my pregnancy, Celia’s neural tube, which holds the brain and spinal cord, didn’t close completely.

“She may never walk,” a neurosurgeon said when Celia was 3 days old, after he patched the hole at the base of her spine. He said the nerves at the end of her spine were damaged irreparably in utero. This meant she was also prone to bladder, bowel and kidney problems and was likely to develop hydrocephalus, which causes fluid to build up in her brain, creating pressure.

My life seemed over at first. The words spina bifida rang through my head constantly, making my stomach churn. Her birth defect crushed me. It violated my vision of a perfect family.

I didn’t realize then that a new existence had begun for me, a little sadder at times, but more in tune with life’s deepest joys and sorrows. And I couldn’t know that this tiny, fragile person would blossom into the charming, vibrant being she is now.

An irrational yet aching guilt, heaped on top of the daily terror of possible complications, left me and my husband mostly exhausted those first months. Just getting through the day felt like a major accomplishment.

We clutched on to things, like her first big smile and the way she carefully fingered the plastic shapes on her mobile. She developed quickly in all areas not affected by her disability. She was happy and pretty. Walking isn’t everything, I reasoned.

I’m OK, she seemed to be showing us. We got a little used to spina bifida. Despair lifted.

The word normal took on new meaning. To walk with braces is normal for Celia. And normal, for her, is the plastic tube implanted in her skull and trailing into her abdomen that drains fluid from her brain. I don’t think about it all the time anymore; it’s a piece of equipment to sustain her life and preserve her intelligence. All the things she needs for her life to work will be normal for her.

In most ways she is like any other 2-year old--curious, funny, loud and precocious. In other ways she is extraordinary. An inner strength propels her to do things I thought she might never do, like climbing up the slide at the park, or taking these first steps away on her own.

And so what was initially incomprehensible and devastating became manageable because the quality of her life required that it must be. The only alternative would be to live in a gloomy cycle of anger, guilt and depression.

And that just doesn’t fit with Celia’s nature.

She bounds around the house, leaning on her yellow and pink plastic shopping cart. “I’m running,” she says, laughing as she steps up the pace. The big, confident smile and happy eyes can charm the most jaded clerk or medical technician. She’s glad to be alive. And absolutely sure of our delight in her.

Celia doesn’t know she has spina bifida yet. I’d like to freeze time and keep her here longer and save her from the inevitable childhood cruelties and the pain of future surgeries.

I worry that having spina bifida will shut doors for her or, worse, that she will feel cut off from a society obsessed with physical perfection. The urge to shelter her is strong, but over-protectiveness will only sabotage her growth. Our task, then, is to focus on her abilities and downplay her differences.

In the last bit of the 20th Century, a disability is not a drag on productivity, but something to accommodate. Attitudes are changing, thanks to a small army of parents who fought for their children’s right to attend neighborhood schools.

Those with disabilities and their advocates have muscled through a new federal law designed to prevent discrimination and to make our society more accessible. Celia will be a beneficiary of their struggles.

She’s stepping out into a new world--a world that was mostly closed to children with disabilities a generation ago. It’s a scary and exciting place for me, too. I’ll be right behind my spunky child as she forges ahead, challenging mind-sets and marking new milestones.

But for now I’ll step back and savor this one. I can live for months on the memory of two wobbly steps and a glowing grin.