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:
Friends,
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.

11 comments:

gerisullivan said...

One bit of clarification, please. You ended your post asking those friends, "Please do not call, write, try to visit, or otherwise contact us before we contact you." Did the supportive contact with the congratulations, flowers, and chocolate cake (what, no pie?!)...did it all start when you contacted folks, or did the support come pouring in despite your "wait" message?

I ask because I remember struggling with the question myself at the time. Looking back at your online posts tonight, I'm surprised I waited several days after you'd started posting more to comment on your journal even though you were clearly signaling that it was okay to speak up. Ah....my congratulations went on your wife's journal the day after your son was born. It felt like a safe place to express them as her post didn't come with a a "give us space right now now" request. At the time, I remember the comfort of comments from mutual friends and listening over and over again to the brilliant song another friend wrote.

Even the most informed, smart decisions to provide support – the whens and hows of providing it – are delicate in the face of clear directions to hold off, to wait.

I re-read many of those old posts tonight, too. For me, the sniffles were tears of joy reading again about the day you finally were able to bring your son home.

David Perry said...

Geri - That's a great question and the days are blurry. We reached out to B&K and Harriet Manor the next morning, I think, but I have no recollection how. Did we call them eventually? I think so. Did one of us email first? I can't remember. I remember K. saying, "cute parents, cute baby," over the phone. I had called our parents briefly, I remember, in painful short conversations, not long after Nico was born.

And then we talked to my wife's family, who were awesome - in part because there's a girl with DS who is about 5 months older than Nico, so they were already on top of it.

And then I opened up my lj to comments within a day, once the raw shock had eased a little, and you, our community, were so wonderful and helpful in the transition.

gerisullivan said...

Thanks, David. Looking back at your initial post these years later, I'm struck by how effectively you packed a lot of information into very few words, and how much the framing of your initial message contributed to the success of your community's response. We were all waiting for the birth announcement. You started with the birth announcement, signaling the news to come with that "mostly" before healthy while also focusing on the healthy part. You named the diagnosis, which gave direction to our research. You expressed your appreciation for the support received before your son's birth, and let us know you and your family were going to need more support in the future even as you clearly signaled your need for time and space to deal with the thoroughly unexpected and unanticipated reality at hand.

In short, you gave your community what it needed in order to give your family the support you needed. There are so many other ways that immediate scene could have played out on all sides. You were a key provider of information in those early, shocked hours. Your wife was, too. And that helped ease the way for all that followed.

The fact that you were able to write such a concise, coherent, and, yes, considerate message when you were "wracked with shame, grief, and fear" is remarkable to the point of astonishing. The understatement of your last sentence, too.

I hope this doesn't come across as increasing the burden already on parents and family members who find themselves in the position of needing to share hard news. We all do whatever it is we can in those moments, and styles vary all over the board. The only way forward is through. I'm glad your support network helped you through those early days as well as all that has come since, and I hope you can see the ways in which you helped that work so well.

David Perry said...

Interesting. I've never read it that way, but I'm glad that's how it worked.

Mary M said...

Thank you for sharing your beatiful story David, I cried all the way through it. Yesterday, at work, I recieved the phone call at 23 weeks pregnant that our baby boy has Down's syndrome. I have spent the last 20 hours crying, researching, and reading stories like yours. Do you have any resources to help prenatal parents?

David Perry said...

Dear Mary - I do, I do. Thank you so much for reaching out to me. These first days are so hard, but you're going to enter a strong and supportive community.

In another post, I'm going to offer you a few resources, but my #1 suggestion is to go find a physical community, not an internet community, if you can. Meet parents, doctors, therapists, and most of all other people with Down syndrome. Making it all more concrete helps a lot.

I'll be right back with more resources, but let me say first congratulations on your pregnancy, best wishes for your health and his health, and I hope you'll come back to the blog to share pictures of your boy when he's born.

David Perry said...

For solid up-to-date information I like - http://downsyndromepregnancy.org/ and http://lettercase.org/ - there's lots and lots of information there.

http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy - this is a website for other moms with prenatal diagnoses (or who had them in the past). I'd go there right away and get to know people. You can create an alias.

I told some friends who work more directly with families and they may show up in the blog and offer some links too. Everyone agrees that making contact with local families, if that's possible for you, is a really important early step.

David Perry said...

Also if you're on Facebook, there are lots of groups, including very private ones. https://www.facebook.com/DownSyndromeDiagnosisNetwork is a nice place to start.

David Perry said...

And here's the DSDN website if you're not on FB or want a private connect. http://www.dsdiagnosisnetwork.org/#!support/c1pna

Mary M said...

Thank you, I appreciate your help so much. I look forward to making some connections, embracing our future, and greeting our little boy in a few months!

Mark Leach said...

Mary: I blog on issues concerning prenatal testing and Down syndrome. At the Prenatal Resources tab (linked below) are resources recognized by professional medical guidelines. Daily I receive comments like yours and these moms have found the resources helpful. I hope you will, too. Here's the link: http://www.downsyndromeprenataltesting.com/prenatal-resources/