First of all, readers, I have finally posted a promotional clip for this book proposal. It seems to be necessary these days for authors to double as pitchmen (or pitchwomen).
Now, on to the business at hand -- the latest installment of MIRACLE BOY GROWS UP ... (O, that I were in your shoes, encountering these words for the first time!)
Finally, finally, finally the door opens and Mom and Dad come out and they're smiling and talking and shake hands with Dr. Spiro, who waves at me.
"So what was that all about?" I ask in the elevator. Dad's pushing me. I'm facing the back wall but it's a mirror so that's okay.
"Just grown-up talk," says Mom.
Mom is intense and coiled-up inside, like something forceful and beautiful wrapped in a tight package. She's about a foot shorter than Dad; Dad's a good six-feet-two-inches, with broad shoulders, though he's not athletic. One of the things Mom and Dad have in common is a great faith in doctors. To them, medical science holds all the answers. "It's not so many years since a man named Dr. Salk cured polio," Mom has told me many times.
I'm not too keen on the idea of a cure for my amyotonia, though. I'm used to my life as it is and any change would be really weird to get used to. I'm not so badly off as many people think I am. I'm not. I'm not like other handicapped kids!
In the car, my chair folded and crammed between the front and back seats, Dad driving, Mom tells me more. We always take the car to Dr. Spiro's because his office is in the Bronx or Queens or someplace like that. "Dr. Spiro is pleased with you. He feels you're doing fine."
"He always says that,” I say, even though it feels good to hear.
"He sees almost no change from last year, which means your amyotonia may be stabilizing. He says it's now called spinal muscular atrophy. You're not losing strength, and you should stay the same your whole life. You know there's no cure still, but you're not getting worse."
You mean I could have been getting worse? I can't recall a time when I had more strength than I have today. I'm told I crawled a little as a baby, which I can't do now, but I figure I was smaller and lighter then. In any case, I don't remember it. I have no sense of lost capacity. So Mom's news ripples past me with little impact.
Mom says we know the worst of it now. She sounds relieved as she says this. From behind the steering wheel Dad adds, "That's good news," in case I didn't understand. If it's such good news, why was I kept out of the doctor's office? And what took so long in there? Just grownups' way of doing things, I guess. I look out the car window. It's getting dark.
If the bad guys pulled up alongside our car now and started shooting, I'd crash out through the window and jump on top of their car. I'd reach inside their window and pull out the driver. If the car started to skid off the road I'd jump off just in time. I'd roll on the ground with guns flaring. They'd run and I'd chase. They wouldn't have a chance. Even if they thought they had me they'd be proved wrong. Just when the bad guys felt I was down and out, I'd shock them by coming up strong and defeating them all, just like I surprise doctors with my strength and intelligence ...
"Of course, you're not going to get any stronger either," Mom says then. "There are no treatments for spinal muscular atrophy, none discovered yet anyway, but that's okay, isn't it? We'll keep hoping, but meanwhile we have to get on with our lives."
I can't read her face. There's a sharp turn at the end of the Triborough Bridge. I know it's coming. It always makes me tip over sideways in my seat, and I silently brace for the inevitable.