Ben

How Life Touches Us

Ask just any parent of a child with a disability, and they will tell you of the incredible feeling of vulnerability that they felt upon hearing that their child had a problem. In a modern world, we have grown accustomed to having risk mitigated and managed (if not eliminated ) from our lives. Disappointments are something archaic, happening to people far away, sanitized for your TV viewing pleasure.
Disappointments, accidents, changes, or whatever you want to call them often give way to things of great beauty and complexity. No life is a mistake, but often how a life is lived is a mistake. When we make a choice or refuse to make a choice out of fear, we are committing a mistake.

Ben is doing well...

We found out last month that Ben's deafness is genetic--a defect on the connexin 26 gene pair. This is, in a strange way, a good thing. It means that we are not responsible for his hearing problems--it was just the luck of the cosmic one-armed bandit. Additionally, it means that Ben will be a good candidate for cochlear implants if his hearing is sufficiently poor enough.
The hearing aids are not really doing much help. Ben pulls them out whenever we put them in. He is such a slick about it too. He casually reaches back, like he is going to brush back his thin, red hair, and just when we are not looking, he snatches them out and shoves them into his mouth. He has a bit of the sneak about him.
Jack, however, doesn't. God help him, he will never get away with anything. Jack is about as subtle as a tornado in a trailer park. I love them both with all my heart, but Jack is more like me than what I would have hoped. In the last week it has been the worst. He's spit on one of his teachers and told another that he hates her. Somewhere in the heavens my mother is laughing herself sick. Payback, as they say, is a bitch.

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