On Being Normal
I was one of those teenagers: always in trouble for going outside the box, for thumbing my nose at authority, for having ideas that made others uncomfortable; always in the soup somewhere. I felt "different," and I spent a great portion of my adolescence not only believing I was being unfairly treated, but secretly longing to be like everyone else.
For many years I believed that a husband and family (and probably a white picket fence and dog) would make me seem more "normal." I married at 25 (already a spinster, then), and got pregnant immediately.
Lucky for me I gave birth to this luscious, gorgeous, black-haired, green-eyed baby boy we named George. He proved to be smart, fun, funny and perfect. He talked at nine months (his first word was "this" of all things! He said a hundred words before he said "Mama" or "Dada"), walked at ten months, spoke in sentences at twelve months, read at three, and was tested as having a 145 IQ at five.
Was I proud of him! (not to mention a bit smug for having a kid smarter than anyone else’s kid) And although I ended up divorced and starving by the time he was 18-months-old (oops! Well… that’s almost normal), I knew that being a mother and complaining about homework and dirty rooms and junk food put me smack dab in the "normal" range.
Then one day I woke up to a limping nine-year-old.
"Look, Ma. My foot won’t go down."
The toes and sole of his left were raised, and he was walking on his heel.
"Hmm. Odd. Did you hurt yourself yesterday? Does it hurt?"
"Nope. But I think I can get my shoe on."
"Let’s watch it. Hopefully it will go down today. Let’s see it when you get home."
George was one of those healthy kids that never got the mumps or flu when everyone at school got sick. He had a sunny disposition and never complained. It never occurred to me that the problem wouldn’t go away. Immediately. Ever. That was the kind of thing other mothers whispered about when friends of friends’ children had bad things happen – it could never happen to me.
Over the next few days, I watched while George’s foot continued to be raised at this odd angle. We went to a massage therapist -- thinking maybe he had pulled a muscle. It didn’t help. Then we went to a hypnotist. Then a physical therapist.
After another week like this, I decided to take him to a foot doctor. The doctor seemed to be concerned, and sent us to a specialist.
And as we made the rounds from to doctor to doctor, it became apparent that whatever was wrong with his foot was now wrong with his leg: his whole leg began curling at an odd angle and George began limping, quietly complaining that he was getting cramps that hurt.
Over the next month, not only did we visit every type of specialist, we were given several different diagnosis. All of them were horrific: Muscular Dystrophy -- Duschene’s type (the worst one - that kids die from when very young); Wilson’s disease (never heard of it); Leg Perthes (nope. Not that one either.).
Somewhere around Muscular Dystrophy I began crying. I was scared. I was single, poor, had no health insurance and my son was swiftly becoming crippled. Not to mention less-than-perfect. In the blink of an eye I went from being a normal divorcee with a smart, cute kid, to the mom of a crippled son.
After four months of doctors and three months of George just about losing the use of his left leg, starting to lose the use of his right leg and losing the use of his fingers and hand and I-didn’t-know-what-else-was-going-to-be-next, we put George in the hospital for tests. That was bad enough, but he was also put on a ward with adorable kids and babies that had curable illnesses. I walked the ward during the long nights, feeling resentful of these small, ill children, knowing they’d get better and my son wouldn’t.
By then we knew that whatever George had was serious. It was just left to be determined if he would live -- and for how long, and in what state of crookedness.
Eventually George was diagnosed with Generalized Torsion Dystonia -- a movement disorder that attacks voluntary muscles. It looks like Cerebral Palsy except it doesn’t attack the brain. Because it’s so rare, and comes in many forms, it’s unusually difficult to diagnose. Luckily, I found a test study going on in a New York hospital. George was put on a medication trial, and we began what has become a lifetime battle with gravity vs. ambulation vs. pain.
So, by the time he was ten, George was a crippled child. He couldn’t walk any more -- he even had a three month spell of not being able to use his hands or mouth or fingers, until we found some medication that uncramped him.
And all of a sudden, he was "different." He was no longer someone I was proud of -- in fact I was embarrassed by him. He lurched and drooled and dropped things. His friends stopped talking to him -- neighborhood friends he’d had from early childhood, friends who also went to Montessori all their lives and who lived in liberal homes with smart, successful parents.
Kids called him the "crippled creep" and I had to arrange a school assembly to explain to everyone that he wasn’t contagious; that they wouldn’t become crippled from touching him; that he was still the same kid inside but with a different body. And that he couldn’t play with them like they used to.
Every night, when I put George to bed, he would eagerly ask: "Mom, if we pray REAL hard, do you think I might be able to walk when I wake up?"
My heart was utterly broken.
And I cried. I cried non-stop for a year. Lost my job because I couldn’t stop crying. Crept out at night to a neighbor’s house where my friends had Sharon Drew Watch and took turns at 2:00 a.m. holding me while I cried until 4:00. Then back to the house in time to shower and wake George for another day -- fearfully wondering what limb or muscle would have become crooked and useless during the night.
And I had to learn how to love a different person. I had to start from scratch -- first getting over the rage at being dealt a rotten hand and feeling sorry for myself, then at the fury of having a handicapped child. I had to forgive God and my less-than-perfect son and take on the true work of mothering: Do I treat him like any other child? Let him get away with doing no chores? Discipline him when he needed fair limits? Or should I just coddle him and spoil him and pity him? How long should he keep his skateboard? Or try to "walk" to school? Should I make him exercise his legs? Or let him off the hook when he complained?
Of course, I learned to walk the line between lenient and tough, and had to live with the reality that "normal" was just whatever was. And it was all fine.
When George was 18 the doctors found a medication that got him back on his feet in a lurchy way, although the disease will continue to progress for the rest of his normal life span. He's now 30 and a proud member of the Disabled Olympic Ski Team and the Disabled Olympic Soccer Team. He’s won a Bronze metal and a Silver metal over the past two Olympics. Me, I made lemonade, and founded The Dystonia Society where kids around the world could have access to the medication that allowed George to be ambulatory. There are now thousands of kids walking that would have had no hope of walking if these meds hadn’t crossed the pond.
Normal… it’s a word in the
dictionary. Crippled and handicapped… we’re all crippled and
handicapped. Rage and shame… feelings like any others. He’s my kid.
And I love him just the way he is: fun, funny, smart and just a bit