So, this headline came across my RSS feed and I clicked. A Republican from Washington State,Cathy McMorris Rodgers, has a 1-month old son named Cole who has Down Syndrome.
She says: (quote from the Time article)
"This news has been difficult to get our arms around. Like every parent, we have hopes and dreams for our children," McMorris Rodgers said in a letter to constituents and supporters. "Although initially stunned, we are embracing our son and preparing for what may lay ahead."
It was a positive article. I deal with developmental disability so much that I forget this is a tragedy at first for parents, that's it's a shock and a big adjustment. Quite honestly, I think it's a probably the same sort of shock that you might have when your 18 year old daughter gives up a college scholarship to move to L.A. and try to be an actress. It's having to match dreams and expectations of your child with who your child is. But you have a little bit more time to adjust with a typical child. With a child with a developmental disability, all of those conflicts and feelings are there, right up front, almost as soon as you learn who your child is -- or before.
I think sometimes that the greatest gifts caregivers and strangers can give parents is to come in and see your children on their own terms. Not as "what should have been." Not the baseball player their father wanted, or the scholar their mother wanted. Not as autistic or disabled or different than the other kids in the class or on the playground. Just who they are right now in this moment. And that's quite a gift. I think parents of people with developmental disabilities don't get to do that as often -- they are thinking that every temper tantrum is a downward spiral to the institution and every good day might mean living independently. Every bad day is a judgement on their parenting and a cause to question it all. Should I have done more/less/different therapy?
Caregivers have their own pressures, but we don't have to worry about the future so much. We just get to love. And hopefully, allow parents to relax a little, see their children for the gifts they offer strangers and caregivers, and realize that it's okay. The world may say you need to try to therapy all the handflapping out of your kid, but it's okay to love the handflapping as part of the kid you love.
And that's a wonderful privilege. Who else has a job like this, where all you do is love? Okay, so you wipe butts and deal with Wal-Mart temper tantrums and end up with nothing to show sometimes when it's over, but you know what? That's never wasted time that you spent loving and serving another human being.
What I wanted to comment on was the sidebar article to the main time article, again, about early pre-natal testing. I discussed this issue here, so I won't go into it again. However, the title, teaser, and link to an article that runs alongside an article about a baby's life reads:
The Down Syndrome Dilemma
Is a life with the syndrome worth living?"
How crass is that?
Why is it even a question that a journalist feels okay to ask alongside a story about someone's BABY?
People don't think. The journalist who asked the question assumed that the readers would not be people with Down Syndrome. He/She didn't realize that by pairing the two stories with that headline, it gave this impression:
A U.S. Representative has a baby. Did it deserve to be born?
A step away from that question is does it deserve to continue living? Am I the only one creeped out by the insensitivity of that sidebar? And, I should assert that "it" is not an "it." HE is a 1 month old human being named Cole, thank you very much.
Perhaps I should ask whether life as a journalist is worth living.