I’M WITH THE BAND.
Not familiar with THE BAND? Well in June, I was fortunate enough to have one of my posts published on the fabulous group blog Band Back Together. If you’ve never checked it out, please do so. This is a blog for survivors, all survivors. Anyone can share their stories and give each other support. I’m so honored to have Aunt Becky, co-founder of Band Back Together as today’s guest post. I’m also SO psyched because I’ll be meeting her this week at BlogHer. We’re both taking the Pathfinder session “My Blog as an Agent of Change”. Yay! Thank you Becky for being here and for all that you’re doing for others with The Band.
“Becky, there’s something wrong with your daughter’s head,” were the first words that my doctor said as I laid there, grunting and pushing out my last-born child.
Now, I can think of a lot of words that I’d like to hear while pushing out a baby, “wow, you have beautiful legs,” “this baby will grow up to change the world,” or even, “woah, you look funny when you make that face.” Those words I could’ve handled. But never, “something wrong with your baby’s head.” Those words should go together as often as “Tom Arnold” and “string bikini.”
A bachelor’s prepared nurse with a penchant for anatomy, I knew that this was bad, even as my husband tried to comfort me. The NICU team swirled and whirled and ultimately decided that this was, in fact, very bad indeed.
My three-week old daughter, Amelia Grace, went in for neurosurgery to remove a piece of her brain that had been jauntily hanging out of the back of her improperly formed skull. An encephalocele, this was called, and while she survived and went on to kick some major ass, I was never the same.
When I finally played Dr. Google, I realized how little information was out there about this particular neural tube defect. Or post-traumatic stress disorder, something that kept me up night after night, as I relived those hellish days, over and over.
A humorish blogger for many years, I took to my blog, Mommy Wants Vodka, and wrote my heart out. And while I’d expected the comments to be more along the lines of, “Be funny again,” they were anything but. People I’d never heard from began to send me emails, comments, and opened up about their struggles. A seed was planted in my wee brain as I struggled to overcome my mental illness.
On September 10, 2010, it came together, like most great ideas, from absolutely nowhere. What I needed to do was to create a site where we could share our stories, each of us, in a moderated, safe environment. With the stories, I’d create resource pages – finally using those zillion dollar nursing texts – with as many topics as I could conceive. That way, someone who was reading about depression, could easily read about the syndrome itself, without having to resort to Dr. Google.
It was a place we could Band Back Together – to realize we are none of us alone – and to support each other through the ups-and-downs of life.
And, like our contributors, the site has helped me heal. While I will never be the person who waddled into that labor room to deliver that very sick baby, who I am now is someone I can finally be proud of. Someone who sleeps soundly now, knowing that somewhere, another lost soul is reading these words, realizing that they, too, are not alone.