Dear Speech Therapist:
I am writing to you today on behalf of my daughter, Amelia.
It took me a long time to admit that the birth defect that my daughter had been born with had caused her to develop abnormally. No one wants to imagine their child has problems and all that we’ve dealt with in Amelia’s short life have been problems. Potential problems. Wait-and-see problems. Real problems, too.
Thanks to an improper aligning of cells around 28 days gestation, my daughter’s brain developed (in small part) outside of her head. At three weeks of age, she had surgery to remove this brain matter and fix the skull that hadn’t properly formed.
In her short life, she’s dealt with more than most and she’s handled it with more grace and dignity than I ever could.
So today, I write to you on her behalf.
You are her second therapist, hired by Early Intervention to help my daughter find her words. I like to picture them floating around her beautiful brain like fireflies, someone like you hired to help her find and catch them. If I could have done it without you, believe me, I would have. Accepting help is not something that I excel in.
But I have realized that you have a talent that I do not and I reached out and asked you to help my daughter, the girl with curls like a halo, to help her find her words.
The first therapist Amelia had was fantastic…but was allergic to my cats. She stuck it out and worked with my daughter as long as she possibly could, attempting to EYE OF THE TIGER through it until my daughter was able to find a replacement.
Then we found you. Therapist Number Two.
I’ve met you twice now. My daughter likes you. That says a lot. Amelia is rather picky about Her People.
Three weeks ago, you called off services, claiming you couldn’t make it. Some sort of meeting you wouldn’t be back from. How you didn’t know that ahead of time, I wasn’t sure, but I tried to give you the benefit of the doubt. It happens. Things come up.
Two weeks ago, you called off again. Sick this time. Again, that’s fine. Sick happens. I’d rather you not bring sickness into my home anyway. I’d just had surgery and needed to be sick again like I needed to be kicked in the face by a donkey.
Yesterday, you had your scheduler call. This time, you claimed that you were allergic to my cats. You wanted to continue services by meeting at the mall. THE MALL. Along with the Mall Walkers and teenagers, we were somehow supposed to meet with you at the mall. Right. That makes sense. Because the entire point of having services in the home is because children my daughter’s age learn better in their own homes. The mall is not an environment that is conducive to learning and as an “educator” you should know better.
What offends me most about this is not that you wanted to meet at the mall. It’s that you are lying to me. If you had such a problem with my cats (I have 2 cats, not 23), you should have said so three weeks ago when I had the ability to start the search for someone new then.
Instead, you’ve given me three flimsy excuses and now my daughter has had no therapy in three weeks. Three. Weeks.
While that is not a long time to an adult or even, perhaps, a three-year old, this is a huge amount of time for a child her age. You should know that and you should be ashamed of yourself for putting her in this position.
You left me no choice but to fire you. So I did. I can’t have someone so obviously flaky trying to teach my daughter to find her words.
But I’m hurt that you’d do this to her. She’s had a hard life. You’re not making it any easier on her.
My daughter, though, she’s a fighter. She’s doing just fine on her own. She’s come up with a number of words you never taught her because you’d never bothered. Really, it’s your loss.
You’re lucky I’m too infirm to hunt you down and make you blow bubbles with her.
I honestly hope that your other patients are treated with more respect and regard than my daughter has been.
Sincerely,
Aunt Becky
(phone rings)
Aunt Becky: (breathless) “Oh. My. GOOOOOOOD!”
The Daver: “What?”
Aunt Becky: “You’re not going to BELIEEEEVVVEEEEEE IT!!!”
The Daver: “Uh, what?”
Aunt Becky: “The most AMAZING THING JUST HAPPENED.”
The Daver: “Did an Uncrustables Truck break down in our driveway?”
Aunt Becky: “No! BETTER.”
The Daver: “Did you get contacted to write for Dexter next season?”
Aunt Becky: “Even cooler!”
The Daver: “Did you get a check for a million dollars that you DIDN’T have to pay back at 99.9% interest?”
Aunt Becky: “Nope! Guess again!”
The Daver: “Did you get your own Lifetime Original Movie where Tori Spelling would play you?”
Aunt Becky: “NO!”
The Daver: “Did you finally design a working robot monkey butler named Mr. Pinchey you’ve been carefully planning out for 3 years?”
Aunt Becky: “Not yet! Soon Mr. Pinchey will be MINE!”
The Daver: “Did you find out McDonald’s was actually good for you?”
Aunt Becky: “My ass wishes!”
The Daver: “Did you finish the Panic Room you’ve started in the treehouse?”
Aunt Becky: “Still trying to lug the lead doors up the trunk!”
The Daver: “Did you finally teach the cats to dance?”
Aunt Becky: “They’re getting a little funky fresh, but not yet!”
The Daver: “Did you find a way for our whites to get even whiter?”
Aunt Becky: “I miss Billy Motherfucking Mays.”
The Daver: “Did you find a source of non-addictive Vicodin?”
Aunt Becky: “That’s on my agenda for the weekend.”
The Daver: “Then I give up.”
Aunt Becky: “OH MY GOD. SO I GOT THIS EMAIL…I CAN’T BELIEVE THEY SENT IT TO ME!”
The Daver: “Wow. Must be quite an email.”
Aunt Becky: “It was from someone I’d been meaning to email for AGES. And SHE emailed ME first.”
The Daver: “Okay.”
Aunt Becky: “IT WAS FROM THE SPINA BIFIDA ASSOCIATION. THEY WANT TO WORK WITH ME, DAVE. ME! MEEE!
The Daver: “Yeah?”
Aunt Becky (sings): “OH HAPPY DAY!”
Aunt Becky: “This is huge! Do you even know why!?! I’LL TELL YOU WHY. You know how Mimi has an encephalocele, right? That’s a neural tube defect. The Spina Bifida Association is a BIG DEAL for people with Spina Bifida! Spina BIFIDA is another NEURAL TUBE DEFECT!”
The Daver: “Yep!”
Aunt Becky: “They want to work with me to raise some awareness for Spina Bifida, which DUH, of course I’ll do. If Mimi’s encephalocele had been farther down her spine, it would have BEEN Spina Bifida, right? OF COURSE I’LL HELP ANY NEURAL TUBE DEFECT SOCIETY.”
The Daver: “Of course!”
Aunt Becky: “But this is exactly what we’re going to do with the encephalocele website we’re putting together. It’ll be for parents of kids with encephaloceles. There are so few of us out there, but still, we deserve a big website, too. IT MAKES ME SO UPSET THAT WE HAVE NOTHING, DAVE. But anyway.”
(breathes deeply)
Aunt Becky: “MAYBE THE SPINA BIFIDA ASSOCIATION WILL WORK WITH ME SOMEDAY! The March of Dimes is already thrilled about our website! And I have some of the top neurologists in the country waiting for us to get it all put together.”
The Daver: “Yay!”
Aunt Becky: “NEURAL TUBE DEFECTS UNITE!”
The Daver: “If anyone can make that happen, it’ll be you.”
Aunt Becky: “We’re going to do this. Katie, Nikki and I. We’re going to do this.”
The Daver: “You will. And it will help so many people.”
Aunt Becky: “This is better than the time I mixed Count Chocula and Frankenberry Cereal. Now I’m off to call the Spina Bifida Association.”
The Daver: “Okay.”
Aunt Becky: “I’ll try not to sound like a creepy fangirl.”
The Daver: “Good luck. Because you kinda are a creepy fangirl.”
——————
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)
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