“It’s the best club you never knew you wanted to join.”
People say this about becoming a member of the Down syndrome community, and oh my goodness is it ever true! Very few people want to join the club of parents raising a child with Down syndrome—in fact, for some it’s a fate so seemingly awful that they choose not to have their child. But then there are those few smart souls who make the choice to “join the club” and purposely adopt a child with Down syndrome, and do you know why? Because they realize how awesome it truly is.
I’m not one of those smart souls, and in fact most of the parents of kids with DS I know aren’t. Most of us became part of the club because of a twist of fate that resulted in us carrying a child with an extra chromosome. I became a part of the Down syndrome community unexpectedly, when my sweet Sam was born and almost immediately diagnosed. But the community embraced me and my family with open arms, and it was indeed the best club I never knew I wanted to join.
What makes that so? Well, a lot of things. For one, people with Down syndrome are awesome. Just like any person is born with the potential to be awesome, so are people with Down syndrome. We look at any child, any new baby, and see the potential for his or her awesomeness. What will this child do? Who will he become? What will he love? What will his talents and gifts be? The same is true when you have a baby with Down syndrome. After the initial shock wears off, we don’t look at our children and see only their challenges; we look at them and see their awesomeness. And when we see how hard they work to accomplish things, they kinda seem even more profoundly awesome.
But second, this “club” of people with Down syndrome and those who love them is just incredibly welcoming. I think I’ve blogged before about how much I appreciate the acceptance and welcoming of people in the community, and I truly do. Truth is, I’ve never been much of a “community” sort—I know people who get great comfort and joy out of their church community, for example, but that’s never been for me. I tend to be a little more of a loner, though I do have plenty of friends. I’m just typically not a “group” sort of person. But I’ve now found a group that I truly love—the group of parents who are all raising kids with a chromosomal makeup similar to my son’s. That group is just full of a whole lot of smart, interesting, loving, accepting, hilarious people.
My biggest connection has come from a group of moms informally called the “Rockin’ Moms.” We’re not called this because we rock (although hey—maybe we do! We’ve accomplished some pretty cool stuff!); rather, it’s short for our very long official group name: ‘12/’13 Moms with Kids Rockin’ the Extra Chromosome. This is a Facebook group that I somehow joined after Sam was born. I don’t even remember how I joined it, since there are a bazillion Facebook groups out there. But somehow I stumbled upon this group and joined it, and I’ve found it to be the most excellent group of mamas.
There are 145 of us Rockin’ Moms, and that’s all the initial group will ever have—it’s closed simply to keep the community small and intimate, so we all feel like we know each other. The administrators have opened up other Rockin’ Moms groups for mothers who tried to join after it was closed, so it’s not as if anyone is shut out—but the initial community stays relative small, so we don’t run into the problem of having it become a large, anonymous-feeling group.
This is the first place I go whenever I have a question about DS. Or a question about my older son, for that matter. Or when I need to gripe, but I don’t want to do it publicly for all to see. It’s also where I go for laughs, because these mamas are funny as heck!
Interestingly, I’m a member of several groups of parents who have children with DS, and the communities are strikingly different. In one group (whose name I won’t mention because I don’t want to offend anyone!), fights seem to break out on a daily basis. There are a lot of hot tempers, and there’s a lot of drama flying around. There is not the warm cohesiveness that I find in the Rockin’ Moms.
Why is that? I think size is probably the answer. The drama-filled group is a lot bigger. That’s a whole lot more personalities flying around the Internet, you know?
I don’t like drama. I avoid it whenever possible. And so, I appreciate the drama-free sanctuary of the Rockin’ Moms group. These ladies are kind and respectful to each other. Do we have differing opinions on things? Of course! And that’s part of what makes it interesting to talk! But we respect each other’s opinions, and there’s very rarely any drama involved. Which makes it a place we can go to talk things out, knowing that it’s safe and we won’t be attacked for having a different viewpoint.
And hey, these ladies have accomplished some pretty cool things! A bunch of us got an offensively named lipstick, endorsed by Kat Von D, taken off the market by raising a ruckus with the company (Sephora) and bringing it to the attention of other DS advocacy groups. One Rockin’ Mom wrote an open letter to an Internet troll who insulted a picture of her beautiful son, and after being published on Huffington Post, it went viral and was seen by people all over the globe. Six of these ladies came together to form a nonprofit dedicated to providing objective, up-to-date information to parents receiving a diagnosis of Down syndrome. Many of us came together to compile a book of stories for new parents of a child with Down syndrome. We’ve raised money for other Rockin’ Moms in need, and we’ve sent cheer-up packages to mamas who need more than a virtual hug. In short, this group isn’t just there for emotional connection, although that’s a big part of it—it’s also there to help people and to work toward change to make a better community for our kids. That’s a whole lot of awesomeness wrapped up in one place, isn’t it?
I’ve become friends with a lot of these ladies. They aren’t just fellow members in a really cool group; many of them I consider to be true friends, even though I’ve only been lucky enough to meet a few of them in person so far. So that club I never knew I wanted to join? Not only did it bring me one incredible son, it gave me a whole amazing new community of friends—my “soft place to fall.”
Thanks, Rockin’ Moms! Thanks for letting me and Sam and Theo be a part of your beautiful lives!