When I started blogging, it was mostly to make other people laugh and poke fun at the few blogs I’d ever seen. I co-blogged on my first blog, Mushroom Printing, with my home-slice Pashmina and I’m pretty sure that the only people that read it were people that had either seen my yapping maw in person or rampant spambots trying to sell me knock-off drugs at bargain basement prices (how could I resist? I mean, really).
I’m still not sure why I ventured out on my own.
I guess I’d found that I really liked to write.
I was lonely. Desperately lonely.
The people who liked stories about queefs and analogies about penises that looked like “a baby’s arm holding an apple” weren’t the same people who could possibly relate to how cripplingly lonely I now was, stuck at home with an infant who wouldn’t be held by anyone but Your Aunt Becky and a husband who was home approximately .0004 minutes a week.
I wrote and I wrote and I wrote. Of course, when you start a blog, readers don’t come flocking, and even after I’d gotten some readers, I’d never connected that people actually READ the words I wrote.
Even now, when I sit down to peck out a post on my keyboard, I don’t actually imagine that the words I write on my own screen are read by anything other than spambots. I know you’re out there because I keep up with most of you on your own blogs, but I still don’t realize that you know me.
And that my words might actually mean something.
My daughter was born in January of 2009 with a neural tube defect called an encephalocele. It’s a fairly rare defect of the bones of the skull. When she was a wee fetus, no more than a blob of cells really, those bones didn’t fuse properly and part of her brain developed outside of her skull.
Somehow, this was undetected throughout my pregnancy, despite many ultrasounds and various screening procedures, and when she rocketed into the world, all hell broke loose.
I was lucky enough to have my Band of Merry Pranksters here to hold me up when I was sure that the world was collapsing around me. In a room that had previously been full of oxygen, I could no longer breathe and you all brought me tanks of air, and stroked my hair, telling me that it was okay to be afraid because this was some fucked up shit, indeed.
Every email you ever sent to me, all of you who reached out to me during those times and every other time, telling me about your own children, how they struggled and how scared you had been, I saved them all. Maybe I didn’t answer you because I couldn’t; I was literally paralyzed on the couch, I cried every time I got one.
I cried because I wasn’t alone anymore. It didn’t matter where I was, I wasn’t alone.
I’ve never forgotten that kindness you continue to bestow upon me and I never will.
This January found me celebrating the my daughter’s birthday while struggling mightily with some Post Traumatic Stress Disorder related to her birth. I was floundering, clawing against the darkness and trying to find my light when I got an email.
Someone, by chance, had happened across my blog, searching for “encephalocele” or possibly “neural tube defect in babies.” Someone had just found out that their child, their 18-week fetus had what appeared to be an encephalocele and had been desperately searching for a success story on the Internet to give them hope.
I doubt I’m the first blog you come across when you search for those terms, but there in Google, somewhere, my blog, my profanity laden blog was found. And you can find no greater success story of someone kicking the ass of an encephalocele to give you hope than the hope of my daughter, Amelia Grace.
This is why I am so proud to be a March of Dimes Mom. This is why I am so proud to be a blogger. This is why I am so proud to be Your Aunt Becky and have a Band of Merry Pranksters to love on.
The email I got was from Nikki, who is now one of my best friends. I mentioned her in a Go Ask Aunt Becky, asking you guys to spare her and her baby some great thoughts and prayers back when she’d emailed me initially.
Well, Internet, Your Aunt Becky is an AUNT!
This is Lily Grace and she is my niece! Doesn’t she look like me? (just nod, Pranksters)
Lily is doing fantastically, neurologically intact and clearly adorable as hell, which goes without saying.
Lily is having neurosurgery today, a similar procedure to what Mimi had, although she does not have a true encephalocele. Her neural tube defect is filled with cerebrospinal fluid only, which is considered to be a win if you’re a neurologist. Being full of brain matter is much, much worse, so YAY for cephalocele or meningiocele, or whatever fancy thing the kids are calling it these days.
Today, Pranksters, I’m asking you to spare some love and light and prayers for sweet baby Lily Grace, who will, no doubt, kick brain surgery in the teeth like her cousin Amelia Grace, for whom she is named after (in part).
And I want to, once again, thank you for being there. Maybe I’ll never truly believe that actual PEOPLE read my blog, but I do know that the connections that I’ve made, the friendships I’ve made, those remind me of something that I desperately needed to know. Something we all need to be reminded of.
Every word we write, every tweet we send, every connection we forage, every friend we make, every breath we breathe, we are none of us alone.