Monday, October 29, 2012

It Matters

Acceptance Matters.  Inclusion Matters.  Patience Matters.  Understanding Matters.  Education and Awareness Matter.

Down Syndrome Awareness Month is about over what?  What does it matter?  Why does it matter that we continue to try to educate the general public about Down syndrome and what it is really like to raise a child with Down syndrome?

Here's why...

According to recent studies, 90% of women with a pre-natal diagnosis of Down syndrome choose to terminate the pregnancy.   90% !!!!  (And that is lowest estimate I found.  Many other estimates are more in the 93-95% range.)   Ninety percent do not want to be "burdened" by a child with special needs.  Ninety percent see Down syndrome as hopeless. Ninety percent of women who receive a pre-natal diagnosis of Down syndrome do not feel that a life like Anna's is worth living.

This isn't a pro-life vs. pro-choice issue.  This isn't a Democrat vs. Republican issue.  This isn't even a religious issue.

This is an issue that stems from a lack of education and out-dated stereotypes.  It stems from the doom and gloom outlook that is given by doctors when they are delivering the diagnosis.  It stems from a lack of awareness in the general public of what Down syndrome really is, and why it is not to be feared.

When the doctor first came to talk to us about Anna and his suspicions of Down syndrome, the picture he painted was not pretty.  There was a lot of talk about mental retardation, developmental delays, common health issues, etc.  If he ever talked about how much joy Anna would bring to our family, or all of things that she would be able to do, I never heard it; I was already swimming in my sea of fear and misery.

I really knew nothing about Ds before Anna.  I had a few out-dated stereotypes in my head, but that was about it.  There was a whole other world out there that I was completely unaware of, let alone wanted to be a part of it.

But, the grief period ends and you can't help but feel the love.  Health issues can be overcome with the wonders of modern medicine.  With early intervention and a supportive school system, developmental delays can be minimized, and your child can grow to their fullest potential. Fears subside as you start to realize your baby is, well, a baby.  For the most part,  life will be normal (whatever normal is).

Children with Ds will have friends and be invited to birthday parties.

They will play and swim and climb.

They will love and change your heart and view of the world.

Nobody wishes for Down syndrome, but some of us get lucky.  Unfortunately, most people will never know how lucky they were.   Ninety percent of women with a pre-natal diagnosis choose to terminate their pregnancy, and 100% of those 90% miss out on what would have most likely been the greatest blessing they would ever receive.

So, it matters that we spread awareness about Down syndrome because the world is missing out on a lot of beautiful people who were never even given a chance to share their magic.


  1. LOVELY post! As always you have a way with words! Love the pic of Anna kissing Maggie!