Friday, October 16, 2009

31 for 21 - Day 15 3/4: Down syndrome NOT a punishment, not at all!

I just stopped by one of my favourite blogs - Big Blueberry Eyes. I'm sure you've heard of it if you're in the Down syndrome community. Michelle's is one of the very first blogs about having a child with Down syndrome that I came across three years ago. Her beautiful presentation of Kayla and her family made me certain that Aidan is going to have a good life. And that we are going to have a great life right alongside him.

Today Michelle wrote about someone's comments that are out there haunting the blogosphere. I've copied a portion of Michelle's post so you can get some of the context of my frame of mind this morning:

You'd think after 6 years I'd learn to grow some thick skin and not let things like what was said bother me, but this one just cut me to the core.

I've heard "suffers from Down syndrome" enough to become mostly immune to that ... although it does still irk me because Kayla is not 'suffering.'

But this one was something else, the commenter said: " belief that Down's is a cruel and unusual sentence to visit on a child."


Did I really just read that? Cruel and unusual?

Then there was this: "Far more Down's children live miserable, suffering lives than these individuals want you to believe. Viewing the lives of affected children, and simple education tells me that I could never force a child to endure what they would should they be born with Down's."

After reading this, I have a very heavy heart. I know that it is just one voice in the conversation about Down syndrome...but I worry about who that voice belongs to. How much influence does that one voice have? What if a pregnant woman has been presented with a diagnosis that her unborn child will have Down syndrome? What if that pregnant woman does a little on-line research to learn more about having a child with Down syndrome? What if that opinion is the only one she reads before making a decision about her unborn child?

I'd like to end this post with a comment left by a former colleague of mine on a post I made a little while back. I worked mornings at a K-9 school with "Fergie," and I often took Aidan in for visits with the children and spoke openly about Down syndrome with them. This is the second year I've been away from that school (and that Province), but I'm glad to say the students have not forgotten Aidan. Here's Fergie's comment:

Hey Carol, this post struck a chord with me. I read The Memory Keeper's
Daughter this summer (on your recommendation) and then the other day in science class my kids and I were talking about genes and from there we started talking about different genetic disorders, down syndrome, you and your family and how people used to put people with down syndrome into homes. My kids were quite horrified with that idea. They all remembered Aidan and couldn't believe that
anyone would have ever done that. Hope your Thanksgiving is going well!
Okay, now my heart isn't quite that heavy. There's a whole classroom of middle school kids who are a little wiser for having met Aidan. Thank God for that.


Michelle said...

Aaaw thanks for your sweet comment about my blog! Wish I could give you a hug :) I liked reading your take on this issue too - and you're right - who knows what kind of influence this person has! I love how you ended though; Aiden is out here changing minds!

Becca said...

Hey, Carol--I'm so sorry I've been so bad about reading blogs lately. I've missed you guys! Incidentally, I had the brief pleasure of meeting Michelle and Kayla this past weekend, and Kayla is certainly an inspiration. Aidan is definitely out there changing minds. You just have to remember how many people our children have already touched. One at a time...