Ramblings on Down Syndrome

I often feel like people don't REALLY believe me when I tell them how wonderful Ruby & Lilya are.  Like when Ruby was a baby, and I'd tell someone that she had Down syndrome, they'd give me that look, full of pity.  I'd say, "No, really, she's AWESOME!" and they'd smile, like 'Sure, you HAVE to say that... '

I think bringing home Lilya does in its own way show that we love these girls, and we're not fearful or devastated by that extra chromosome.  We didn't adopt her to prove a point, but I think by choosing her to join our family, it makes a point on its own.


This is all swimming in my head lately not only because October is Down syndrome awareness month, but because there's an advanced test that will likely be available soon, for pregnant women.  It will be more accurate ... and since the termination rate of babies with Down syndrome already hovers around 90% ... well, it could be a matter of time until it's rarer than it's ever been.

I'm glad people are speaking up -- like this article:  Down syndrome's rewards touted as new test looms

If you don't know who Brian Skotko is, he's a doctor at Children's in Boston, and grew up with a sister who has Down syndrome.  He's well-renowned for his expertise -- and I for one appreciate that he takes the time to make his voice heard with the media, when the rest of the medical profession often leans the other way.

And, I'm so grateful there's a huge community of people -- parents, siblings, people with Down syndrome -- who are blogging and connecting and sharing their stories.  All these people, sharing their daily lives -- that's the real education prospective parents should have access to.


Because, the bottom line is, if it hadn't been ME, I don't know that I'd fully get it.  If I had a cousin or friend who had a child with Down syndrome, I don't know that I ever would've fully understood this simple truth -- I love these girls.  They are my daughters, and I love them.  I love Ruby and Lilya JUST AS MUCH as their siblings.  I don't love them "despite" their Down syndrome -- most days, I rarely even see it.  And when I do see it, it's usually because they are doing something that amazes me, with their perseverance and determination, even when things are challenging.  

What I see -- and what I hope the world will see -- is that they are wonderful, beautiful, delightful, mischievous little girls, and I'm a better person for being their mother.