Penny Wolfson

Themes: family, raising children with special needs, genes, destiny

I'm being a little picky with the rating here, but I think I'll leave it.

Penny and her husband Joe were enchanted with their little baby boy. Despite a lot of ambivalence about being a mom, she fell fast in love with this adorable child. It wasn't until he started preschool that his teachers started to notice a few odd little things. He has a strange walk. His vocabulary was great for his age, but he had some odd grammatical tics. He was a little clumsy. But it took some outside prompting before they got him tested. The verdict - he had Duchenne Muscular Dystrophy. It was progressive; it would cause muscular degeneration; and eventually, it was fatal. This is their story.

It's a well told story, and I found myself drawn in to their lives and their drama, but I had a hard time connecting with the author. The way she copes is by distancing herself and living in denial as much as possible. It may work for her, and I can't judge her, having never been in her shoes, but it made her dilemma seem a little unreal.

I found myself asking which would be harder to live with, her situation with her child slowly degenerating to an inevitable end, or mine, with three children who struggle with mental illness and have their ups and downs, and no way to know how it's going to end. We have almost lost both daughters at least once, but we've pulled them back and the struggle goes on. It's exhausting. But it's not inevitable, so we keep going. What else can you do?

As I said my prayers last night, I found myself in tears, desperately grateful for my children and like Penny, feeling overwhelming guilt for my occasional shame at having less than perfect children. I MUST do better. They are counting on me. Life keeps going, and it doesn't get easier. So I need to suck it up and carry on.… (altro)