We all know new motherhood often brings isolation. Well, believe me, new SPECIAL NEEDS motherhood is no exception to that rule. In fact, I willingly and actively created that isolation. For the first nine months of Olivia’s life, I didn’t tell anyone (outside of my immediate family and two best friends that were medical professionals) that she had been diagnosed with Cerebral Palsy. On one hand, I didn’t understand what was happening to my recently traumatized body (like many first time moms), but I also couldn’t begin to wrap my head or my heart around what was happening to hers. I drowned myself in research, was constantly overwhelmed, and in some ways left every other relationship I had to fend for itself for a couple years. Four years later, I’m grateful that I’m able to look back and laugh a bit at myself, having made these MONUMENTAL mistakes in my motherhood journey with no permanent harm done.
OK. Now that I’ve warmed this post up with a bit of heavy introspection, I should come clean. This post isn’t about introspection. In fact, it’s about being totally extroverted. This post is about 3 days of being light-hearted, and being about as extroverted as I can be. This post is about being willing to put myself out there and go to a 3-day, slightly out of control party. With a bunch of people that I met on the internet. Laughing, drinking, dancing, crying. A bunch of people, I might add, throwing axes. I mean seriously, what could go wrong? Right?
Moms instinctively know the internet is a big, scary place. Predators lurking around every firewall just waiting to lure our unknowing children into God knows what. Heck, trying to lure adults into God knows what. All of us get that, and that’s a good thing. We should absolutely approach everything in cyberspace with a heavy dose of skepticism. In reality, I think we also know that there is a lot of good out there; that it roughly mirrors real life. It’s just harder to tell what’s good and real because we can’t actually see it or touch it. I’ll admit, I’ve found some real gems online. Some life-saving gems that helped pull my new family out of the dark and into the less dark. Perhaps the most positively impactful came to me in the form of a Facebook group.
Don’t roll your eyes. It’s not one of those Mama Drama Facebook groups where we talk about skin care, Kohl’s coupons, or whose marital discrepancies have come to light. This Facebook group is called “CP Warriors, Mommies, Daddies, Grandparents And Caregivers” and it is made up of just those people. It was started by a mom and dad that, just like us, didn’t get adequate support for starting their special needs parenting journey and didn’t want that to happen to anyone else. Today, it’s a group of over 10,000 real people. It’s been an absolute blessing for me. I contribute, of course. But on a daily basis, here are a few things I get from the group: tips and tricks for getting Olivia to participate in therapy, surgery and medicinal recommendations, equipment reviews, validation, and emotional support that has helped so much to sustain me.
Once a year, the moms in this group set aside a long weekend somewhere to try to connect in person and to enjoy a few days of respite. This year was in Nashville, and this year I decided to go. Knowing that you’re not alone is one thing, but actually not being alone is another. Rachel, the mom genius that planned an out of state trip for 47 people, instantly hugged me when I walked into an ax-throwing event. It was like she removed my 30-pound weighted vest. All she said was “it’s so nice to finally meet you and thank you for coming.” BTW – I was the first place ax thrower. You think I’m stressed? Hah.
No, actually, I’m not crazy. I went halfway across the US to meet people that I don’t know for a weekend of intense connection and a whole lot of vodka sodas while listening to the umpteenth cover of Journey’s “Don’t Stop Believin.” I was the last person to arrive – and honestly, I did that on purpose. I was scared out of my mind. What if they were weirdos, or jerks, or I didn’t fit in, or people I met on the internet?! I’m already a nut job, so all of these things had me seriously questioning whether I’d get on that connecting flight. But man, as I’m sitting here in the Austin airport, on the way home, blinking back tears, I’m so glad I did.
Really, after all my emotional blather, what I’m saying is there is real value out there in the parenting world to be found – on the internet or Facebook – but nothing compares to looking into someone’s eyes that knows what you’re going through. I think if Allison Reynolds hadn’t started the group and posted a video of her daughter Brookie, the Anders family would still be in a pretty dark place. I’m sure I should say something about the power of network or emotional support, but the bottom line is that these fierce women have not only impacted me, but they are helping raise my Olivia.