Ben and Michelle by Terry Boisot
The Bond 9/7/04
Life has been busy and a topic for today’s article only became clear a few hours ago. Last night was a reminder
that I don’t have to look very far to find something meaningful to write about. When passing Ben’s room shortly
after my usual “goodnight,” I saw yet another remarkable demonstration of the unconditional respect my
children have for one another. It was evident the day Ben was born thirteen years ago. It has only grown.
Ben’s sister Michelle was three the day we were told he would live his life blind. After gaining the knowledge of
what “blind” meant, she only said, “That’s okay. I don’t care.”
She still doesn’t.
After turning out the lights in her brother’s room, Michelle had an afterthought and turned back to hug him one
extra time. She said, “I am looking for a car to buy that fits your wheelchair, Ben. We have places to go
together and things to do. If you like, I can bring you to school and pick you up. Maybe I’ll get a truck, or maybe
a van or station wagon.” Ben reached out to give her a hug back. I watched it.
Michelle’s ideas for her first car to buy are hers and Ben’s, not mine. She has earned and saved that money for
more than ten years.
Only a moment ago I glanced out the front window and in her two arms, Michelle was carrying her 95 lb brother
outside to sit in the beach chair she had put in the yard. She isn’t much bigger than he is. I wondered for a
moment why she didn’t ask for help, but I guess she just didn’t want any. I walked over to the window for a
better view and watched as Michelle washed the family car. The two of them sang along with the music blaring
from the boom box. I noticed for the first time that my daughter sings like angel, and my son sounds like a
foghorn.
They didn’t care. They’re a duo.
The other night I asked Michelle what she thought the future would hold for her and for Ben. “Haven’t you
asked me this before?”
Yes, but tell me again.
“I can see it,” she said. “We will have our own lives, maybe in different towns or cities. Ben will have a home,
doing the things he enjoys, being with the people he likes, making choices about his life. I will have a family, my
children will all be adopted, my work will be to help the lives of others and Ben will come visit us. I’ll like that and
so will he.”
Her dream is so simple, yet considered a pipe dream by some. She isn’t ignorant of what it might take to get
there and will know what to do. She has been watching it all for too long. Her strength, determination, devotion
and love both worry and scare me – her burden is such a huge one to carry. Yet, I feel thankful and proud.
Long after I am gone, Michelle will be there for her brother in times of need, even if the developmental services
system that makes unfulfilled promises is not. If necessary, she will fight every battle to the last in her attempts
to win the war against a system that wants to institutionalize him without regard for the life he expects. She
would selflessly give up her own dreams of a family to help her brother achieve his. She has said so. I know her
sleep will be fitful until she achieves the inclusion and freedom Ben will want. She loves him that much. I saw it
today.
Their bond is indestructible.
What can I do to take the burden away? They are just kids.
Unfortunately, not very much. That is the burden I carry.
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