Wednesday, July 20, 2011

Ben's story

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.


Dear D'Arcy,

Ben giggles because he has you --and that's the truth!!!

Great story! Please entitle the next one--whenever that may be--"Benny!"

We'll be waiting.


Oh, it's so good to hear from Ben's father. I am so happy that you posted this --

I love this story and it amazes me how much Ben's personality is the same as Tabitha's. She is also a giggler, despite 21 operations and other interventions. She is also non-verbal, therefore leaving us asking the same question, what IS so funny?

Lisa x

Hello Everyone,

I wasn't going to say anymore, but the truth is, "I'm a giggler too; I know what's so funny!" For instance, just yesterday, my mom was outside hosing-down the compost bin, and I, per usual, was in my room reading a book, pondering a thought or commenting on BLOOM, when she all of sudden sprikles me through the window. I look in her direction, and she has this mischievous smile on her face, as she yells out, "Oops!" My Mom isn't home right now, but I'm still laughing.

Then, there's my Dad, who's English has never been good, but this doesn't stop him. He awoke this morning to put on a pair of shorts, and all the while he's singing his own tune, "Aren't you think I'm sexy." I know why he was singing, it deserves a whole lot of giggles.

My sister, Toula, whom is working at the moment, took a trip to Australia a few years ago. And, when we told her that the flight was at least 18 hours or more, she replies, "What am I going to eat, my fingers? My sister LOVES her food!

We can't forget my brother, John. Although be recently got married and had a baby, he still goes out now and then. So, last weekend, he call me up and says, "Matt, I am going to drink, smoke and gamble, and we're not going repeat any of this to the wife. Are you in? We came back at six in the morning. Now, when he finally his ball-and-chain, I don't know how loud she was yelling, but we had a hell of a time! All we have to do is look at each other and we'll burst out laughing.

Lastly, my brother, Angelo, who can drive anything with wheels, is fixing his motorcycle for the summer. He tells me, "Matt, I'm going for a rip" --this means, "He's going to tear up the road. This is worthy of a smile too.

We are giggling with love at all the fun moments. You should try it sometime!!! :)


Thanks for not editing, Louise! That's the whole purpose of this (writing, life, perspective...) it's about stories. It's about the stories we tell ourselves. It's about the stories we don't. It's about the stories of others. It doesn't matter if "the story" is true to us because it will be true to someone else. I've been learning a ton about this lately, and what I've learned most is that it's important to tell some story but also to let someone else tell theirs, too. We love you for your story and Ben's dad for his. Sending much love from the Gorts!

You're right Tim. Everyone has their own "truth."

Thanks so much for your support! Hugs back to everyone there in Grand Rapids! xo

Matt -- thanks so much for sharing those hysterical moments! I love hearing about your family -- those moments make life so rewarding!

You can send Ben a message at Camp Kennebec by putting his name in the subject line and emailing to

They give them to him at dinner. He won't be able to respond but I'm sure he'd love to hear from you. Thanks again for sharing those brilliant family moments.

HI Lisa -- I would love to hear more about Tabitha. I couldn't find any photos on your blog, but I guess that's because it has a different focus.

Can you email me a pic of her

And remind me how old she is? It's great to hear from you and I"m glad Tabitha also has the giggling streak!

Thank you Elizabeth!

Has your hubby every written on your blog???

What a beautiful post!

'Special' children teach us very special things about life that we would never have the privilege to see if it wasnt for them.

Thank you for sharing this story as a reminder of that.

with love
Diana x

Hey Louise,

I will be sure to email Ben eithier today or tomorrow. I'm also wondering, if it would not be a good for Ben's worker to jot down a few of his friends and their email addresses, enabling me to help him keep in touch when he comes back? I know that there is pros and cons to whatever choice we make, so I guess the questions becomes: "In the long-term, 'What is emotionally best for him?'" I wish I had the answer to this one.

Anyhow, sharing my family with everyone was fun, as I have never witten in such a manner before. Nonetheless, I must admit, "I was a pretty funny kid, but as an adult, I'm not exactly 'carefree.'" There's just so many things that need to be done for adults with disabilities, and it looks like, the boy, who ran from his disability and out of Holland Bloorview, is finally ready to stand-up for those who can't.


Thank you for posting D'Arcy's beautiful story, Louise. I loved several of his images like "seasons tickets to the doctor's office" and "touched with a fairy sprinkling of luck" Just so lovely and heartwarming.

I agree with everyone above beautiful post Louise you both have done so much for Ben and he has come so far. Reading Ben's story makes me want to do even more for Ashley to help her along. Thanks for always encouraging me on.

Thanks so much D'Arcy, for sharing your love for Ben. It is always nice to hear from the dads. Ben sure was blessed with the best parents.