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....

10 comments:

Erin said...

I would be tempted to say "That's because there is nothing wrong with him. If anything, there's something wrong with your attitude" but that's probably a bit rude. It just really annoys me when people say things like that... I'm sorry you get stupid comments. I know how it goes! Happy very late Canada Day. I'm glad you had a good day despite the questions.

Mummu and Poppa said...

To us, Bennett is perfect.

Love conquers all and Bennett gives everything he has to anyone who is willing to take a moment and enjoy where he is and where he is coming from.

... sometimes people are so 'hung up' on themselves that they miss the important things in life.

Keep on sharing and spreading the love and enjoy life to it's fullest.

Love
Poppa and Mummu
xxx ooo xxx ooo xxx ooo xxx ooo

Dawn said...

Joe and I are just the opposite of you. We don't mind sharing Austin's story. But sometimes I think it's probably not cool because it's like we're making excuses for him, kwim? Honestly I'd rather people ask then just stare and wonder. And most people aren't malicious about it I'm sure. But I totally get the "I would never have known anything was wrong with him." We too get that a lot. I guess I just chalk it up to people really not knowing what to say and I know they mean well. I know I wouldn't ask others though and as such usually I just mind my own business, but then in that regard I sometimes come off as insensitive I fear.

Ugh, didn't mean to ramble on here. Just one of those deals we'll have to live with forever until they can start answering for themselves.

Mo said...

I get you. Nothing is wrong with our kids, they are the way they were intended to be. Pure and simple. Bad attitudes are 'wrong', mean people are 'wrong', hate is 'wrong' but nothing is wrong with a sweet soul who happens to wear a brace. Unfortunately, only the lucky few who live life in our shoes will ever understand.

Sheila said...

I couldn't agree more! I hate the comments, despite their well intentions. Maybe we should make it our jobs to educate these people so they know better! Glad you had a great time anyway. Bennett is doing great!

TherExtras said...

You do just fine with words - really better than fine! I think.

I like the first part of Erin's answer.

I also tend to keep personal information sharing to a minimum when I am asked. Agreeing with you on that, for sure.

I encourage you to not be so hard on yourself - your comfort level might change over time - so give yourself more time.

With the intention of making you feel better, I will come out here with the location of a very unflattering photo of myself from our holiday weekend. http://bit.ly/94nb3H

(other) Barbara
(It's okay to laugh at the photo - you have provided me with more than a few laughs - thankyousomuch!)

Barbara said...

Erin - I would definitely use your response - especially if I felt the person deserved it. Most people mean well I guess but as you know the stupid comments can wear you down sometimes.

Mummu - Bennett is perfect - just like his parents and grandparents! And you're so right - Bennett has a lot to give to those who take the time.

Dawn - Maybe in a couple years I'll feel better about sharing our story. But right now I'm just tired of rehashing the whole accident thing. Unfortunately between my own ongoing issues and Bennett's it seems to be a story I have to tell every week. But you make a good point when you say that you worry about appearing insensitive when you don't ask questions. I guess it's all about finding the right balance - a tricky thing.

Mo - you said perfectly what I was trying to say. There's a lot of "wrong" in the world but it's not with our kids.

Sheila - Even though we know most people mean well, it's very hard to hear the same things again and again. And sometimes reminding myself that the person meant no harm doesn't help...

Barbara - Thank you for sharing the photo (I didn't think it was unflattering at all!)- it didn't make me laugh but it made me smile! I love the umbrella - what a creative way to show your son that you were out there!

Kiera Beth said...

This is such a hard topic. I agree with you that there is nothing wrong. In our few years since diagnosis, we have handled this in a number of different ways. Initially we would just leave it as "he needs it to help him walk." Now we usually say that he had a stroke to try and raise childhood stroke awareness.

You are absolutely right that you do not need to tell people anything. I agree with Dawn that sometimes people think that they have to ask so that they do not appear insensitive.

When you come up with the perfect answer, I would love to hear it :)

Kara said...

Sorry for jumping in late.....

I agree with all the comments so far, but have something else to add. What's with people assuming that if someone has a disability they should "look" a certain way??? It's insulting to those not "lucky enough" to blend into society because they're in a wheelchair, or drool uncontrollably, or their eyes don't quite focus in the right direction.

I have such little patience for those comments these days... I commend you for keeping your cool.

Barbara said...

Kiera: I don't expect to come up with the perfect answer anytime soon but I'll keep you up to date!

Kara: You make an excellent point and express it much better than I could have.