11.9.17
Recently, I've seen some news articles floating around about how European countries have basically eliminated Down Syndrome through prenatal screening and terminations. One of my aunts posted a transcript of Frank Stephen's testimony to a congressional committee about NIH research. Frank has Down Syndrome, and spoke to Congress about how countries around the world are using prenatal screening to terminate pregnancies of children with Down Syndrome. He asks Congress instead to fund research for and on people with Down Syndrome. He notes this research centers around Alzheimer's.
Here is the link for Frank's remarks, explaining why he shouldn't need to justify his existence. And he shouldn't. He is every much a person, deserving of life as I am.
Apparently, October was Down Syndrome awareness month. I am late getting this post out.
It's very easy for me to write this in hindsight. Would I have been scared and sad to find out my baby had Down Syndrome? Of course. But I know a little more about Down Syndrome than your average person who may be carrying a baby with it, just from studying it in PT school. I know that people with Down Syndrome can live very productive lives. I know they can be happy, fulfilled, and bring the people around them so much joy.
One of my professors in PT school shared this perspective with us. One of her children has disabilities. I shared it with Anselm when we found out the news. It's called 'Welcome to Holland' by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
