Normally the things that Your Aunt Becky rages against are things like “tofu bacon” (I mean, really vegetarians? Bacon is meaty and delicious. Just…give up the ghost and call it something else. I love tofu. Tofu is not bacon. It will never be bacon) and “thousand island dressing” (because if you had ever been a waitress and had to clean up hot thousand island dressing, which, I should tell you right now, MELTS, into oil and bits of…gross green things *gags* you would call it bullshit, too).
Occasionally, I’ll wage war against a random celebrity, like John C. Mayer, (who, I should tell you, I’ve been at war with since 2003, and this cease-fire I’ve called has left a big gaping John C. Mayer-like hole where John C. Mayer used to be) but really, I can’t get worked up about a whole lot. You have to be smart to get mad about stuff, and Pranksters, we know my IQ rivals boxes of rocks.
This weekend I went on a tear.
I was 29 shades of Furious George because I had been putting together a reference sheet about encephaloceles for Band Back Together and realized, once again, there’s fuck-nothing out there about them.
Now, for those of you not glued to my archives, my daughter Amelia was born with a previously undiagnosed encephalocele in January of 2009. An encephalocele is a nasty little neural tube defect (like spina bifida), only with encephaloceles, the skull, rather than the spinal cord, is the improperly formed bony structure, and in Amelia’s case, part of her brain developed outside of her head.
It’s about has hilarious as it sounds.
Obviously, she’s fine. She kicked that encephaloceles ass.
When I talk about the statistics we beat, it’s staggering to me. I can’t even wrap my mind around the infinitesimally minute minority we fall into without crying.
But what’s bothered me this whole time, besides the lingering PTSD and the unanswered questions about it all, is this: there’s nothing out there for other parents who sit on the computer, perhaps even prenatally diagnosed with some sort of encephalocele or neural tube defect, scared and alone.
I do mean nothing.
Oh sure, you can find some articles about encephaloceles from Children’s Hospitals. Some eMedicine artcicles about encephaloceles. Terrifying images of dead babies. Babies with horrible encephaloceles. The worst case scenario of what your baby could look like with an encephalocele is right there.
If you broaden your search to “neural tube defects,” you find more information. A number of spina bifida support groups. The Spina Bifida Association is an awesome resource and support group for parents of kids with spina bifida. Then again, spina bifida, a sister neural tube defect to encephalocele is one of the most common birth defects. Spina bifida affects 1/1,500 babies every year.
When I first started researching (I’m a researcher at the core of it all) encephaloceles after Amelia had her neurosurgery to correct her encephalocele, I had lumped all neural tube defects together. I had been wrong. I had thought that encephaloceles were much more common than they are.
Spina bifida affects 1 in every 1,500 babies a year.
Encephaloceles occur in 375 babies a year in the United States.
Not 1 in every 375 babies. Just 375 babies. That’s hardly any babies at all.
That’s why there are no support groups for parents of babies with encephaloceles. There’s no one running a website devoted to these particular neural tube defects (that I could find). There are no places to go when you’re scared and terrified and alone and shit, encephalocele is a fucking scary ass diagnosis. Look at the statistics. They’re grim.
Then, look at my daughter:
She’s not particularly grim. Unless, of course, you take away her cuppity-cake. Then she’ll cut a bitch.
Through some magic key, eventually if you search through enough pages about encephaloceles, you’ll find my blog. I know this, because I’ve met a couple of families who, when they’ve been diagnosed prenatally with an encephalocele, they’ve come by and talked to me.
It’s how I met my now-niece, Lily Grace (named in part, I should say, after my Amelia Grace), who is also kicking ass and taking names.
The gut-punch came this weekend, when I saw that in the searches for my new blog, the only thing besides some combination of “Band Back Together,” that people had searched for was “encephalocele – parenting.”
Okay, so that’s when my cold, black heart broke and I got good and motherfucking mad. I knew that someone was searching on the other side of a computer for something that does not yet exist. Some comfort. Some place that does not show you the horrors of a diagnosis that is not always horrible.
After I paced around the house, furious and upset, because Pranksters, that is motherfucking BULLSHIT, I realized that it was time. I’ve been slowly reaching out to people and asking them to contribute stories about neural tube defects to Band Back Together, because that’s a place to start.
I’m gathering research and I bought a domain. I have two partners. Lily Grace’s Mom, Nikki, and Katie. We all think it’s bullshit, too. It’s time to take action.
So, Pranksters, if you know anyone who has a story about Neural Tube Defects, please let us know. OR, you know, if you have some other full of the awesome ideas -like a dance party- let us know.
Or, you can just tell me something you think is bullshit. Because there are so many things that are bullshit out there. Like turkey bacon. And clowns. Clowns are totally bullshit.
(tomorrow, it’s Prank time. We’re gonna pull a John C. Mayer for charity)