Originally appeared in The News & Observer:
Fatal.
Fatal.
"Of course, when it hits so young, it's fatal."
Fatal.
The world is spinning and I'm running, stumbling away from my doctor friend who doesn't realize when I casually mention spinal muscular atrophy that I don't know what it means. Until that one, eternal, nauseating moment on a Saturday in June, I continued to believe it was a generic label, meaning little for baby Kevin, as his mother, Cindy, had said.
But Cindy hadn't known, either. She was tired from excruciating months of tests, angry hours of waiting on doctors, fearful days of not knowing what was wrong with her baby. On that Friday, the doctors had mentioned spinal muscular atrophy but offered no clue as to what it meant. Four more days until Wednesday, when she would get the final diagnosis. Four long days of my already knowing what it was.
Every time I looked at my son over those four days, I cried, sometimes hysterically. How would Cindy go on? For minutes at a time, I could forget, but a sadness gnawed at my every thought, flowed out with my every breath. Then a kick to the stomach. I remembered:
My best friend's baby has a nerve disorder that likely will kill him while he's still young and soft and doe-eyed.
I kept remembering how Cindy and I had talked haltingly of another co-worker facing a similar tragedy, how we said we'd rather be shot than to have to watch a child die. We shook our heads, unable even to find words to articulate the pain that was caused only by our imaginations. It was, at the time, an unfathomable situation to us and, with tears in our eyes, we thanked God for allowing us to remain blissfully ignorant.
But now there's little bliss for Cindy. And certainly no ignorance of how it feels to be losing a child.
Mercifully untouched, I still can only shake my head -- and then marvel at the fact that not only has Cindy gone on, she's marched on fiercely. Where once there was only intense pain for her, there is now unflagging admiration.
Within 48 hours of the diagnosis, she was on the phone with other parents of children with SMA, finding out about the disease, what she would need, what she could expect. She'd had an hourlong discussion with Kevin's pediatrician about his role in Kevin's treatment plan.
She's called innumerable doctors, clinics and insurance people, fighting to see what coverage there is for the myriad equipment she'll need. Kevin's already in leg braces with more on the way, he has a scooter to help him get mobile and other treatments have been considered and thrown out.
But in planning for a future that will involve wheelchairs and ventilators, she's discovered that she'll have to move from her house with its sunken family room and carpeted floors. The scooter is only a source of frustration now because it won't go on the carpet. And the steps are a problem that can't be solved.
It's a house she's labored over for four years, recently painting it just the right butter-colored yellow. It's just the way she wants it. Now she has to leave.
After days of frantic searching, she's found the perfect ranch. Right price. Right location. No steps. And, remarkably, hardwoods under the carpets.
Now she needs someone to buy her house at 1426 Laughridge Drive in Cary.
There currently are hundreds of people wanting to move. Few have to move. Cindy has to move for the most torturous of reasons.
If you're looking for a house, please glance at hers. It's a two-for-one sale: You get a great house and a good feeling.
Burgetta Wheeler is a copy editor.
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