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Ben's story

Posted Jul 20 2011 4:10pm





















This is a story that D'Arcy wrote about Ben (above, in a much earlier photo) and read at his Life Plan day. It's a beautiful piece because he totally pegs Ben when he calls him a serial giggler. When I first read it, I was going to 'edit' it, as D'Arcy's take on some events is very different from mine. But this is D'Arcy's story as much as Ben's, so I didn't touch it. Louise

Ben's story
By D'Arcy McGovern

Ben is a giggler. A serial giggler. No one knows when a fit of the giggles will catch him; at the dinner table; in the pool, gazing out the car window; late at night curled up in bed.

"What's so funny?!" I always ask. But he never tells me. Of all the riddles that surround Ben, questions marks and mysteries that blanket him like a fog, I'd love to know the answer to that.

Because Ben, viewed from the perspective of most of us, might have a lot to be unhappy about.

Ben has Langer-Giedion Syndrome, a rare genetic disorder. That doesn't mean much to most people, but the result is pretty easy to see. Ben is small, about the size of a six year old, though he just turned 17. He cannot speak. Instead he uses some signs, gestures, sounds. "Um-ah" is Dad. "Ma!" is no. He has weak muscles and bones that are covered with bumps that can sometimes grow so large as to be painful. Two of those bumps, on his hip and knee, had to be removed last year because they were making it hard for him to walk. Ben still limps, but he's back walking again and uses his walker and wheelchair less and less.

Movement has been a struggle for Ben for a long time. At age two, Ben was still crawling long after most kids are up and running. He went to many physiotherapists. We built tiny wooden boxes and forced his legs and feet into the proper positions to stand, climb and walk. There were hundreds of hours of these sessions when he cried -- no, screamed -- from beginning to end. But at long last, he stood and walked.

He went to specialists in Detroit, in New York City, in Syracuse who tried to understand why he couldn't talk. They poked and prodded, made him wait, asked endless questions, tried pills, potions, x-rays and surgery. They advised more therapy and when one therapy proved useless, the next was tried, and the next, and the next with Ben coaxed, begged, and pushed into endless rounds of repetition, tears and frustration. There were weeks when doctors and therapists appointments came every day.

And Ben got sick. Every winter we had season's tickets to the doctor's office. Ear infections. Because of the odd internal structure of Ben's ears, he was very much more susceptible to infections, with the fluid pooling up behind his eardrums, causing pain and reducing his hearing. He had eight sets of tubes surgically inserted in his ears to help drain the puss, each working for a short while before blocking up and being pushed out by the building tidal wave of goo.

Ben stopped growing. He was given growth hormones -- daily painful needles for months -- to no effect. He grew thin. A high-fat diet pumped cream and butter into his system. And then a G-tube -- a tube cut into his stomach, with liquid nutrients forced into him to try to get his little body to grow. The tube in his stomach had to be changed frequently, the old one yanked from his belly while he was held down screaming, a new one jabbed in and inflated.

Tears. Tears all 'round.

At nursery school, Ben mostly played alone. The nannies, the moms, the other kids were unfailingly polite. But Ben couldn't communicate, and the other kids, jabbering away a mile a minute but met with stoney silence, slipped away where Ben couldn't follow.

Kindergarten at one school ended abruptly after Ben was found bound to a chair -- punishment for some minor discretion.

And then Ben was touched with a fairy sprinkling of luck. He found an alternative grade school -- Alpha -- filled with eager, compassionate kids and teachers, who brought Ben into their family. And Ben experienced the miracle of friendship -- real friends to play with, to go to birthday parties, to swap toys, to share their lives.

Ben started to read, comic books and picture books, gazing at them for hours, going back to the same ones over and over. And computer games, a source of endless mirth and often the spark for an explosion of giggles. He had electronic friends: Reader Rabbit, Putt Putt, Freddy Fish, Pajama Sam and printed ones, Geronimo Stilton and Captain Underpants. The real world Ben found so hard to relate to came a little closer through the virtual world of books and games.

I have stood amazed as Ben has made his way through the world, stunned that so much pain, so little return for so much effort, has left him not bitter and disconnected, but happy, open and even at times serene. I have said more than once that Ben is like a balm for my soul. On my worst days, I can come home and melt into his little arms, swallowed up by calm. Ben bears no grudges, makes no judgments, accepts all faults. And he is always ready for a good laugh.

So, I'd like to know why Ben giggles. But not because I need an answer. I just want to join in the fun.
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