Grocery Package

Timothy Perry lives in Waterford, Michigan with his wife, Jackie, and their children, Lauren, 6, and twins Patrick and Chelsea, 4, who has spina bifida and hydrocephalus. Timothy is a free-lance feature and advertising writer, producer and voice talent.






  Grocery Package
Timothy Perry

I do diapers. Lots of them. I wash dishes, do laundry and wipe runny noses. I take my daughter, Chelsea, to therapy sessions and doctor appointments. So it was no surprise -- to me anyway -- that this father might be grocery shopping with his daughter one busy Saturday morning at the local mega-market.

"Excuse me..." came a tentative voice from behind me in the checkout lane. I turned to see a silver haired woman in her mid fifties.

"I couldn't help but notice. Does your daughter have something wrong with her legs?"

Chelsea sat in the grocery cart. She was grinning wildly and sucking up eye contact like a Kirby upright, but three inches of orthopedic bracing were plainly visible to anyone who cared to look.

"She has spina bifida," I offered. "Chelsea can't really walk on her own."

I wondered if this woman would react as so many others have... by abruptly ending the conversation without uttering another word. Confronting disability turns many people instantly mute. It's an all too common response, but one to which I have always tried to be empathetic. After all, two and a half years ago, I was walking in their Reeboks.

"Oh my. She looks so... healthy."

"She is, really!" I declared.

Chelsea is as bright, intelligent and cheerful a toddler as any I know. She exhibits none of the physiological cues that point to conditions like Down syndrome or cerebral palsy. Seated in a grocery cart, there is little to indicate she has any problem at all... unless one spots those braces.

"I'm afraid I don't know what spina bifida is," the woman volunteered, her tone suggesting a fair bit of apprehension.

"That's OK. When she was born, neither did I. But you can bet I do now!"

So... just how much to tell this woman? We were in a short checkout lane and this could turn into a very long story. But both my wife and I had done this before -- hit the high points and if they ask, deliver additional information on an as-needed basis.

I explained that a child with spina bifida is born with a hole in the spine. As a result, a lot of normal nerve connections never make their appointed destinations. The severity of spina bifida can vary wildly, from nearly total incapacitation to extremely mild physical effects. Chelsea's condition fell somewhere in the cavernous middle ground.

Then I stopped and pondered what this woman's reaction would be if I told her the whole story. Chelsea's inability to walk is but one ramification of our family's situation. I could have talked for hours about the endless surgeries, physical therapy sessions and doctor's appointments; about the medical bills -- big enough to rival the GNP of some third world nations; about the fears that rage inside me like caged demons. There exists an overpowering downside to Chelsea's medical condition, but most times I only see the upside to life with my daughter.

Significant parental bias aside, Chelsea is strikingly beautiful. Once establishing eye contact with a likely victim, she locks on like a pair of vise grips. Perfect strangers are drawn to her gaze... and Chelsea had sunk her hooks into this woman from the get go.

I explained that I really felt quite thankful. Chelsea is a very happy little girl. Her condition is nowhere close to a worst case scenario, and the long term outlook is as bright as can be expected under the conditions.

"But she'll grow out of it, right?" the woman asked optimistically.

Children grow out of a great many things -- colic, ear infections, teething. But unfortunately, spina bifida isn't among them.

"No... I'm afraid she won't."

"Oh don't you give up hope now! Doctors are doing incredible things these days. You never know! Maybe someday..."

Her voice trailed off as my mind revisited familiar terrain. Plenty of things can be done to help someone with spina bifida. Wheelchairs, specially equipped vehicles and other gadgetry are available to smooth off the rough edges... but there exists no cure. Not now, maybe not ever.

"... It really is amazing to see the progress they're making. You just keep praying okay?"

I looked into her eyes, genuinely touched by the compassion of this perfect stranger. She stood in sharp contrast to the cashier whose eyes had remained transfixed on the floor tile throughout this entire conversation.

I pushed my cart forward, then turned. "Keep praying? I wouldn't know how to stop! Comes with the territory. I do diapers, too. Did I mention I do diapers? And runny noses... lots of runny noses!..."

Timothy Perry
Waterford, MI

Timothy Perry lives in Waterford, Michigan with his wife, Jackie, and their children, Lauren, 6, and twins Patrick and Chelsea, 4, who has spina bifida and hydrocephalus. Timothy is a free-lance feature and advertising writer, producer and voice talent.

This article was previously published in "Fathers Voices," Exceptional Parent magazine, July, 1995.