“Hey sister, go sister, soul sister, go sister”
I want to tell you all about my sisters. I’ve got tons of them. They’re all over the world. We weren’t born into the same families, or anything. But we’re sisters, alright. Some of them I see once or twice a week, others I’ve never even met in person. Some I’ve never spoken to, seen a picture of, or even discovered where they live. I’ve seen some in person and we can instantly connect with just a glance. We are the sisterhood of moms of kids with special needs. We’re not shy. And we don’t just sit around a complain or kvetch about our kids or our misgivings. We brag about our babies. A lot. We deserve to. Plus, we appreciate every little milestone and accomplishment the same way “typical” parents do the biggies, like taking first steps. By the way, in my house, Little Bird’s first steps were not cause for just a little celebration; it was a big mother effing deal: It happened on September 28th 2006, about 13.5 months after we were told they just weren’t sure she’d ever walk. I still have chills when I think about it. Do you get it? You might be one of us. My bird tells me she loves me. A lot. Only she says, “I love you, too, Mommy” whether or not I’ve said it first. It’s kind of a script, but that’s ok with me. I wasn't sure I'd ever hear those words from her. Do you get it? Yep, you might be one of us, too.
We speak our own language and many of our conversations are about therapies (speech, physical, occupational, feeding, behavioral, play, etc), or about doctors (neuro, gastro, developmental, physiatrists, geneticists, etc), or about insurance companies NOT covering our kids’ treatments, or about our relationships (marriages, divorces, friends who dropped us, friends we dropped).
The secret handshake is a hug (virtual or otherwise) and the group cheers are “I get it” and “we can do this." In fact, I think most of our “conversations” are encouraging one another and never, ever giving up on each other or our kids. We lift each other up. We laugh together. We cry together. We pray for each other, and we think about each other- yes, even the ones we’ve never met face to face.
It doesn’t take much for us to connect. Last week, while visiting my family in California, I stopped into a Z-Pizza with Little Bird. As she somersaulted her way across the restaurant’s floor, I ordered her a GF/CF pizza. The lady who took my ordered said, “my son’s got it, too.” We locked eyes and silently said, “I get it. We can do this.” We wished each other luck and I took the pizza home. I let Little Bird play on the computer and I made her take bites in between games. Do you get it? You might be one of us.
A few days ago, during my brief getaway with my husband to San Francisco, we sat at Ghiradelli Square and shared a peanut butter fudge ice cream sundae (yes, it was amazing). At the table next to us, a family sat eating their own sundaes. Within minutes the mom and I were comparing notes on therapies, the diet, meds, etc. We exchanged email addresses and a wink. It said, “I get it. We can do this.”
I’ve met and made some amazing friends in the waiting rooms of doctors’ offices, therapy centers, and on the internet. These women have shared their stories, told their truths, offered suggestions. They’ve changed my life. I don't think I could do this without them. They're my sisters.
We get it and we can do this.
Every one of us has a story like this. What’s yours?