Monday, July 7, 2014

Behind the Scenes: Another story of our Down Syndrome diagnosis.

Last week I wrote the story of our son's diagnosis with Down syndrome. Lots of people read it, for which I am grateful.

There's another story here, though, and one that might matter even more than ours - the stories of our friends who supported us.

Each of us is more likely to confront a situation in which someone else needs support post-diagnosis than to face such a diagnosis ourselves (even those of us who have been through it once).

In the essay, I wrote about putting a comment-locked post on Livejournal - you can see my days's postings here - to let the community know, at a moment when we were wracked with shame, grief, and fear. Yes, shame. So at 10:32 pm, January 11, a few hours after Nico was born, I wrote:
Nicholas Quillen Perry is a mostly healthy baby boy, born 8:21, 7+ lbs (I forgot) and of a reasonable size.
He probably has Downs Syndrome, although we are unlikely to know for sure for a week. He has the features and the doctor and midwife are sure.
We appreciate all your support over the recent months, and will need much more in the future.
Right now, he's having a little difficulty breathing, but that is expected to pass within a few hours.
Comments have been disabled. Please do not call, write, try to visit, or otherwise contact us before we contact you. It's going to be a bit rough on us for awhile.
The next day, this happened:
Then our community of friends and family, who had spent the hours since my late-night post and the following morning learning about Down syndrome, kicked into gear. In those first bitter hours, among the more trivial of my dark thoughts was that the man we had asked to be Nico’s godfather wouldn’t want to be involved with Down syndrome. I thought that I should let him off the hook. I felt ashamed of my son, of myself, of my thoughts. I wanted to hide. But our friends … including Nico’s godfather … were up to the task.

When they talked to me on the phone, when they came to see us, they said what you would say to any new parent, “Congratulations!”
“Stop it,” I wanted to shout, “there’s nothing to congratulate us about! This is a tragedy. Lives are ruined.”
But they were wiser, and stubborn, and just kept congratulating us. They came to visit laden with flowers and champagne and chocolate cake and presents. They showered us all with love. They told us our baby was beautiful and cooed over him. Together, my son and my friends carried me out of the first shock of grief. They shifted my perception so that I didn't see just a bundle of symptoms and potential problems, didn't just see a diagnosis, but instead saw my wonderful boy.
In between my post to Livejournal and their arrival, something very important happened. Our friends started searching the internet, they called each other, they planned. They didn't just happen to show up with chocolate and congratulations, they made an informed, smart, decision to provide us with the support we needed.

Nico under the grow lights, day 4 or so
And of course they did it because that information was out there, waiting for them to look. It's another reason that I am pro-information.

You never know when you will be called on to react. Sometimes, like my friends, you might have a night to prepare. Other times, the news reaches you swiftly demanding instant response. People who read this blog and blogs like it are ready. We have to find ways to make sure the information is available more broadly, to have people with disabilities find ways to represent themselves in media and popular discourse, to speak for them when they can't speak for themselves (but mostly, they can!).

Be ready to be that support network. When I think back on those weeks, I weep, but it's not from sorrow anymore. It's a kind of recollection of grief mixed with the love I feel for my son, my wife, my daughter now, even though she wasn't born, and the community that carried us through.

And now I'm off to re-read some old posts and sniffle.