The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Friday, April 17, 2009

Healthy babies

Deborah posted yesterday about her feelings regarding the March of Dimes position on "preventing Down syndrome" and other chromosomal issues. She had a good post, points to ponder, so check it out if you haven't seen it.

It reminded me about how I've been noticing this lately.

Julie and I were walking at the mall recently when I noticed these in window cling form on several of the store entrances. I mentioned to her that they strike me almost, I don't know....misleading? That may not be the right word, but here's the issue.

"One day...all babies will be born healthy."

That sounds like a great idea. Of COURSE, we want healthy babies! What's not to like there? I'm wondering, though... What is the definition of healthy? What does a healthy baby look like? Maybe it's no heart defect, no GI issues, no respiratory problems... but there are many kids with DS that do NOT have those issues. So maybe it's related to the cognitive issues, that dreaded "mental retardation" label. But there are such great ranges of abilities in people that might fall into that category. Can we call them "unhealthy"? And what steps are we willing to take to make that statement come to fruition, that day when all babies are "born healthy"? Something to think about...

As Deborah mentions in her post, quoting from their material, they are looking to prevent DS. I don't know that I want to prevent it. I've really been tumbling that around in my head. I can't imagine there is a way to change each of those cells or to keep the trisony from happening at conception, and I'm not sure what it says that we've deemed this community of people expendable enough that we could desire to eliminate them in the future so that we would be supposedly better off.

To be fair, the March of Dimes did have some better-than-usual info regarding DS on their site, and for that I am appreciative.

I get that life is not going to be easy for our kids. I get that sometimes it is hard to watch them go through the medical stuff that can come up. But that is the case no matter what the chromosome count for your child. Nature is not homogeneous. Differences are often good. It seems to be a bit presumptuous for us as humans to start determining who is worthy of life and who is not. There's more to be said there regarding MOD, but we'll leave that for later.

Just food for thought...

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