Monday, July 5, 2010
What To Say
I apologize in advance for my excessive and inappropriate use of quotation marks in this post. I wish I were better with words.
We went to a Canada Day party on July 1st. It was a beautiful day and it was nice to see friends we hadn't seen in awhile. It was fun watching Bennett hang out and play with the other kids. I so enjoyed N and C's patience as Bennett grabbed them by the hand and dragged them away for walks around the house. I laughed while J, a good friend of Jim's humoured Bennett by going in the water at least three times to retrieve the ball that he kept throwing in. And it felt good to watch one of our hosts gently take Bennett into the house so he could visit with the cat. It was a party where we knew a lot of people well and they knew us and our story.
However, there were other people there - people we don't really know and who don't know our story. Before we left, Jim and I discussed how we were sure Bennett's brace would raise questions - and it did. When a stranger asks about the brace I usually give a very simple answer like "it helps him walk". That's all they need to know - we don't owe anyone an explanation and most of the time I'm not interested in educating people. At the party we were asked twice about the brace and both times we were quite honest with our answer, "he has cerebral palsy". Both times, people answered with "oh...it doesn't look like anything's wrong with him".
As many people who read this blog can imagine, that response didn't sit well with me. I know it's meant well - I get why they say it and why they think it's ok. When we first heard the words "cerebral palsy" our heads were filled with uneducated and preconceived images that were pretty bleak to us as the time. Bennett's face is just one glimpse of cerebral palsy.
Honestly I'm not sure why it bothers me (and I want to emphasize that it bothers me a bit - not a lot) when people say that it doesn't look like anything is wrong with Bennett. In a way I think it's because the words diminish and simplify all that he (and we) have worked so hard to accomplish and future challenges that we face. I also don't like to hear that something is "wrong" with Bennett. Cerebral palsy is part of who he is and it is not "wrong". It just is.
I really don't know what would be the right thing to say - I don't even know what I want to hear. I know I don't want to hear "I'm sorry" - look at Bennett - he doesn't need pity (neither do we) and there's nothing to be "sorry" about. I just don't know....