I needed another job like I needed a hole in my head. But the thing is, I really wanted this particular job. So I decided to make a nice, big hole in my head and cover it up with the new hat I’m going to be wearing: secretary on the Board of the Down Syndrome Diagnosis Network.
You might be wondering why I wanted this new hole in my head, so let me take a few steps backward. It’s no secret that Sam’s birth diagnosis of Down syndrome wasn’t handled in a satisfactory way, at least in my mind. The news was delivered rather coldly and bluntly, when I hadn’t even yet seen him, much less held him. In fact, I was still strapped down to an operating table. Before I even laid eyes on my newborn son, I was told what was “wrong” with him.
Well. That’s a heck of an introduction to a new life, isn’t it? It didn’t get any better when I was left alone with my thoughts for nearly two hours, crying silently in a hospital bed while the staff studiously avoided me. It was the middle of the night, so I couldn’t exactly call anyone. It was just me, my iPhone, and good old Google…which turned out to be a Really Bad Thing. Four years ago, when Sam was born, there wasn’t all that much positive information about Down syndrome on Google. There were nuggets of it, but they were hidden among depressing information about cognitive impairment, heart problems, and higher than normal incidence of leukemia. And then there was the nurse who bustled in and announced cheerfully, “Oh, honey, people with Down syndrome can now live to be twenty-five years old!”—causing me to burst into tears all over again with the thought that I would outlive my precious son.
What I needed then was some sort of lifeline—some resource to let me know that it was all going to be okay. Better than okay, even. That it was normal for me to feel more confused than I had ever felt before…and that when I was ready, there was a lovely safety net waiting for me.
I found my lifelines later, of course. Our families and friends have always been incredibly supportive of Sam and of the rest of us. And I’m fortunate to live in an area with a wonderful local Down syndrome organization. And it wasn’t too long before I met an incredible group of women online who became the first Rockin’ Moms group. We all had children born with Down syndrome in 2012 and 2013, and it felt amazing to have a group of friends I could chat with anytime, anywhere about things related to Down syndrome…or anything, really.
Out of that group of moms rose DSDN. A few of the moms joined together and began working on an online support network that would focus on that early diagnosis stage—from women still carrying their babies in the womb to parents of children with Down syndrome up to age three. They created and facilitate the Rockin’ Mom groups, which stay relatively small and group together parents whose children are a similar age and thus going through similar stages, and they’ve expanded to do much more, all with a focus on providing support and medically backed information to parents of young or as-yet-unborn children with Down syndrome. And although DSDN is fairly new organization, their reach is already impressive. Last year, they connected with more than 10 percent of families who received a Down syndrome diagnosis. Their Rockin’ Mom groups support more than 2,000 mothers. They now partner with nearly fifty Down syndrome organizations. And their newest component is the Rockin’ Family Fund, which provides welcome baskets to families, care packages to families with a child experiencing an extended hospital stay, and scholarships for parents who want to attend Down syndrome–related conferences and events.
Imagine if DSDN had been around when I had Sam, when I was alone in that hospital room crying! How different that night might have been for me. When I heard about DSDN shortly before its official launch, I knew right away that some way, somehow, I wanted to help out. I thought about mothers who, unlike me, weren’t lucky enough to have a close local org to visit and rely on. I thought about mothers like me, too, who had a local org but perhaps couldn’t get there as often as they liked. Or who just needed someone to talk to about DS in the middle of the night…because in a Rockin’ group, there’s always someone online to chat with when you need a friendly ear.
I’ve kept up with DSDN and tried to help out where I can because I love what they’re doing. So when president of DSDN Heather Bradley approached me about throwing my hat in the ring for the open secretary position on the Board…well, I had to think about it for all of two seconds before saying I was interested.
And now, I’m excited to say that I’ll officially be the new secretary. I love how this piece fits in with the other Down syndrome–related work I’m doing for our local org as well—there, I focus on medical outreach and legislative advocacy, and here I’ll be fulfilling an administrative role to support a new but very important national organization.
Funny where life takes you, isn’t it? Five years ago, I wouldn’t have predicted any of this. And now I wouldn’t change it for the world.