Years ago I had bad dream - probably on a day when my arms ached and I was feeling a little weary from carrying Ben. He is getting so heavy, and he doesn't walk. In my dream, Ben was lying on a hospital bed and slowly he passed away. I remember looking up to heaven, with my aching arms outstretched, screaming out his name trying to make him come back.

In the dream, the ache my arms felt was different. It was not from his weight, but from his absence.

My own screaming caused me to awake, bolt out of bed and run into Ben's room to make sure he was still there. I ended up sitting in his room for hours watching his every breath pondering my own fear that his breath would someday stop before mine.

Since the dream and the hours I spent in Ben's room, I decided there was a choice of either; anticipating a life to be short, or helping him live a life as if it would never end.

For now there is no end, only a future

Someone that didn't know Ben might look at him and feel sad because they perceive his life as so limited and can only offer pity for what they believe he can't experience. This is a perception I expect will change when all the Ben's in the world are living in mainstream society

The friends that Ben has made from all the years of being included in his neighborhood school in the regular classroom know differently - all looking forward to their lives ahead together in junior high and in high school.

His friends know naturally to stand within inches of his eyes for him to see their face, and don't give a thought to the wheelchair he sits in because it is all a part of who Ben is. They think his assistive listening device is cool, because they can talk to him in a microphone from across the room in only a whisper for him to hear - its like being a secret agent man.

Ben's leg braces make him a super hero because Batman is painted on the back, he's the only kid at school that wears contact lenses giving him x-ray vision, and his dog, Bob, is not just a service dog, but at Halloween he is Santa's reindeer, a cowboy's horse, or the fireman's Dalmatian.

Ben is one the best parts of going on a class trip to Catalina Island and Astrocamp. His wheelchair seems to fly over all the steps, and because he has no fear of heights he is willing to be the first to walk the plank 40 feet off the ground, giving his friends reason to be brave.

Ben's life experiences are admired. They are filled with adventure and excitement because he swam with the dolphins in the ocean waters of Florida, he has a waterbed to sleep in at night, he rode Splash Mountain at Disneyland five times during the summer, and Henry Winkler, "The Fonz," gave him his autograph after kissing him on the head.

To his friends, he has plenty to say even though he doesn't speak. They know what his smile means, and his frown. They understand the few signs that his hands can form, the occasional word that pops from his lips, the wild gestures of his arms, and his love for music because he sings - kind of.

Life is about living, and this he has taught the friends - the same friends whose arms will ache when he is gone.

Terry Boisot is the parent of a child with disabilities and writes a biweekly column called Disability Matters for the Santa Barbara News-Press, from which this piece is taken with permission. She serves on the board of directors of Alpha Resource Center of Santa Barbara and The Arc of the United States, and is the Chair of the Board of Directors of TheArcLink. She is concerned about all disability matters and welcomes comments at: e-mail: tboisot@silcom.com

By permission from the News-Press as published in Disability Matters at www.newspress.com