Miracle Boy Grows Up Read Online Free PDF

there. Dad takes Alec and me trick-or-treating at our old apartment where we know people. As Dad pushes me from door to door and Alec, wrapped in crêpe paper like a mummy, follows alongside or leads the way, I never think about what I must look like in my Batman costume. A superhero who can’t walk? But we do notice the unnatural attention I receive at some of the apartments we accost. At the end of the night, and pretty much every Halloween, I invariably score more loot than Alec. As if candy will cure me.
    Years later, I will learn of a historical connection between Halloween and disability. I will receive ample evidence of the once-common fear of deformities—the limping, hunchbacked, hook-handed, or one-eyed monsters of ancient fairytales and old horror movies. Even the word “creepy” comes from the same word as “cripple.” And when people like me weren’t feared, they were often gawked at in carnival freak shows or objectified for their noble suffering . . . like Tiny Tim, whose only role in life is to inspire and cheer up other people. Mostly what I know of that objectifying comes from the medical profession, the constant stripping and prodding and X-raying and “show me your tongue”-ing I’m subjected to, ostensibly for my own good but, in truth, primarily to educate doctors about my unusual anatomy.
    At school, other logistical problems quickly emerge. I start peeing in my pants. It’s a logistical problem because I have no way of raising my hand to be excused, no way of taking myself to the bathroom. And I’m embarrassed to shout out for help.
    “What if you had a different way to signal you need to go?” asks Mom.
    She tells me to suggest a word or phrase that’s easy to remember— something I wouldn’t ordinarily say, which has no other meaning, and that I’ll feel comfortable calling out in public. It’s genius! And it’s lovely because it means Mom understands.
    I have no choice but to get my teacher’s help in the bathroom, naturally. I don’t have the luxury of privacy. Yet this should make it less humiliating. I ponder a moment.
    “How about, ’Judy, one two three’?”
    Mom shares the code with my teacher, who likes the idea. I tell myself I’m Jonny Quest on an adventure, complete with a secret code. Again using fantasy to deflect discomfort.
    The battle may be won, but the war isn’t over. In second grade I have bathroom troubles at school again. I’ve become too heavy for my teacher to lift onto the toilet. So one day my parents present me with a blue-green plastic jug I’m supposed to carry every day. A white canvas sack is hung on the handlebars at the back of my wheelchair. The jug fits inside, sort of. Actually, it protrudes at the top sometimes. They call it my urinal. Which doesn’t make me feel any calmer in my stomach pit.
    I’m afraid kids will tease me when they see it—but I must admit it should do the trick. The portable urinal is the latest step in working out the logistics of my attending a regular school, another “reasonable accommodation” my parents devise, decades before that term becomes a point of law.
    But there’s one more complication. This time, instead of a code, Mom sets it up for my new teacher to take me to the bathroom every day after lunch, whether I ask or not. At home I’m already going to the toilet on a set schedule, and it eases the burden of having to ask, so I accept.
    It’s just one example of how my life at age seven has already become highly regimented. When I’m set up at the table with crayons and paper, I know I must have everything within reach, everything I’ll need for as long as possible, so I won’t have to ask busy parents for extra help. They’re kind, but can’t always be at my beck and call. Where other seven-year-olds might choose clothes for themselves and change their minds two or three times, I’m still dressed by my parents and have to select outfits they’ll accept—outfits I can stick with, too,