For Crys

I sat there, glued to the end of the couch, holding onto my new baby like she was a life vest, the light from the end table next to me bathing us in a soft, yellow hue. There were other people around, although it was late in the evening. My sister in law? My mother? I can’t remember.

My sons, too, were around. Perhaps it was just the big one. The small one, based upon my memory, should have been in bed, although perhaps he was not.

Softly, I rubbed the top of my new girl’s head, breathing in that new baby smell. Each time my hand brushed that bump on the back of her head, that hard, fluid bump, the tears formed, my eyelashes grew heavy and I began to moan. I wept into her, so scared of the future. We’d been discharged from the NICU with very little beyond a scary diagnosis and a follow-up card for a neurologist who didn’t take our insurance.

The diagnosis was new, and I refused to use Dr. Google to make myself feel worse. I knew what a “posterior encephalocele” was. I just didn’t know how dire a diagnosis that was. Until later. Much, much later.

I’d bought myself some books – pre-nightmare – to read during those boring hours I planned to nurse my new baby. Word searches, books, and a potential maid service – all things I’d busied myself thinking about, feeling they were very important, until the doctor had said the words that forever changed me – “Becky, there’s something wrong with your baby’s head.”

Now it all seemed so stupid. Who gives a shit about spot-free mirrors when you’re not sure if your new baby will be celebrating a birthday?

But I could not bring myself to talk, to open up, to any of those around me. I knew it would be in vain – if I opened my mouth, I’d just begin to cry those awful, gut-wracking sobs anyway. Lord knows I didn’t need to cry any more – I could barely see through my shiny, swollen eye sockets.

Instead, I reached down into my thoughtfully packed hospital bag and pulled out a book. I’d bought two – a luxury considering I was about to have two under two – The Memory Keeper’s Daughter and Revolutionary Road. I had no way of knowing that these were not books that someone with a medically fragile baby should be reading (one is about a mother who delivers two babies, one with Down Syndrome, who is taken by a nurse and raised separately from her brother and the other about an unhappy housewife in the 1950′s who dies after attempting to give herself an abortion).

I had no way of knowing how horrifying my choices of book were, but there I had them. And I read them both.

In the quiet of that cold February night, I read them both.

It was the beginning of what I called The Middling Place. The space between learning how quickly your world can be turned on it’s head and learning how to live sideways. The space between diagnosis and reality.

The place where you wait.

The place where, in those quiet moments, your heart feels heavy in your chest, the demons and monsters threatening your every move. The Fear a permanent resident in the back of your own skull.

The Middling Place is a lonely place – a secret place, a land of tears, inhabited by you and you alone. Other people may drift nearby, stuck in their own Middling Place, but yours is a solitary land. Some moments, they’re filled with the purest of joy. Others with an unending sorrow.

It’s not always a bad place, The Middling Place, but in those quiet moments, the voice in your head reminds you of how fucked up this really is, your skin crawls and your guts threaten to expel themselves any way they can. You’ve tumbled down the rabbit hole, Alice, and why yes, I’d like a cup of tea – two lumps, no milk, if you please.

And you wait.

On Saturday, thirty of my favorite people in the world came to celebrate my daughter’s birthday – finally. She was so excited (read: crabby) while waiting for her party to begin that I nearly sold her into slavery. But I didn’t.

We prepared by getting into our party dress:

Shockingly, she allowed me to help her pick it out. Generally my suggestions are bullshit in Mimi’s book.

She showed a little sass before complaining that her party wasn’t ready. Guess that next time, I’ll start the party at 8AM. Hope she doesn’t mind if I’m not there. SO not a morning person.

She promptly spilled her morning coffee on her dress, which pissed her off, but she quickly got over it. Her aunts Dawnie and Teala (all the way in from Texas with her boyfriend Brian) and uncles were arriving to help set up the party.

Now, I’m not a party person. I mean, I can do a keg stand like nobody’s business, but when it comes to all artful “this should go…THERE. PERFECT!” I’m pretty useless. One might argue that I’m ALWAYS useless, but that is neither here nor there.

While The Daver and The Guy On My Couch strung streamers, Dawnie and I got relegated to salting the driveway.

(P.S. we did a shitty job)

SPOILER ALERT!

(P.P.S. No one died)

Once the streamers were strung, it was time to bust out the real sweet shoppe stuffs I’d been hoarding.

Kinda looks like Willy Wonka barfed everywhere, right?

Right.

I don’t actually know what this is (it could be tampons) – but it was purdy and colorful.

I can’t resist something shaped like hearts. It’s against my DNA. Plus COLORS!

Then, an old favorite (that’s a lie) that can double as a toilet brush!

ROCK CANDY!

Gratuitous snap of rock candy:

(no one ate the rock candy.)(I’m going to pretend it’s because it was pretty, not because it tasted like raw ass)

Remember these? I do. Back before I had common sense (shut up, I do SO have some now. Like 5. At least.), I remember eating these. By the time I was 8 or so, I was all, WAIT A MINUTE, THIS CANDY TASTES LIKE GARBAGE EVEN IF IT IS SOOOO PRETTY!

I think I got tired of accidentally eating the paper.

And where would a good sweet shoppe party be without weeeee cuppy cakes? (answer: I don’t have an answer)

These cupcakes, made by Dawnie (who cannot salt a driveway to save herself), were not only freaking adorable, but delicious. Mmmmmmm….cuppycakes.

Also made by Dawnie were these:

Tell me these aren’t beyond full of the awesome. Because you’d be a lying liar who lies.

Instead of adding ribbons to the balloons so they could be dragged around the house, plastering my poor allergic face with latex, The Daver had the bright idea to simply fill the room with balloons.

If I teach you NOTHING else, Pranksters, let it be this: DO THIS FOR YOUR NEXT CHILD PARTY. I swear, the balloons occupied the children for at least three hours.

And a Hello Kitty cake for my birthday girl. Made by Dawnie. If she can’t properly decorate the house, at least she can bake. Right?

(I can’t even do that)

For all of the chocolate cake lovers, Dawnie made this:

The birthday girl was quite thrilled by her cake.

The day after her party, the kids opened some presents. We always buy the children who aren’t celebrating their birthday buckets of trinkets and stuffs to play with. It helps a little.

Amelia decided to show off her cannibalistic tendencies.

(lookit Alex. Bwhahahahaha!)

OH GOD, MY EYES!

Hello Kitty did NOT go gentle into that good night.

Alex, tearing into his bucket. Ben was hiding from the camera.

Girlfriend is going to be a better photog than me any day now.

And lastly, I made people sign something for her bedroom.

I’m totally leaving that fake baby in there.

Dear Amelia,

You were born, January 28, 2009, amid the whirring and clicking of the NICU team, over my frantic wails, and my doctor’s shouts of “GET THE NICU IN HERE STAT,” a whopper of a baby. Your rolls had rolls, making you look like a mini Stay Puft Marshmallow Baby. I longed, from my place on the bed where I lay weeping, to examine every one of those rolls. There’s nothing I love more than a brand new roly-poly, chubby cheeked, shit machine.

(you, post surgery)

But it wasn’t so simple, was it?

Amelia, you were born with a defect on your head. Right after you were born, it seemed as though it was probably a cosmetic issue, a benign cyst upon your wee head. The alternative, I knew from years of medical and nursing training, was a big. fucking. deal. indeed.

Guess which one you had?

My daughter, you are always the overachiever.

We had about twelve hours between birth and diagnosis in which we feverishly hoped that it was a boring cyst – your daddy and I and your Internet Aunts and Uncles hoped and prayed that you would be okay. It was only after your first CT Scan (I have to note that there is NO heading in your baby book for “Baby’s First CT Scan” which makes me think those baby book people have it ALL WRONG)(Okay, you don’t have a baby book. I really WISH you did, but you don’t)(sorry kiddo) that we learned that you were more of an overachiever than your mother.

It took hours to talk to a doctor that day, but when we did, the news wasn’t good. You’d already been ripped away from me and whisked off to the NICU, leaving your daddy and I to howl in sadness in our now-empty room. Your dad had tracked down your neurologist and was told that you had a neural tube defect. An encephalocele. You would need major neurosurgery and soon.

Amelia, why did you have to be such an overachiever?

It was there in the NICU that you were given your middle name – Grace. For you, in the face of all this adversity, showed me what grace looked like. Your father, he named you there.

The diagnosis left the future full of question marks (and you with a scar that neatly bisects the back of your head). Would you be normal? Would you survive? Would you learn as your brothers had?

The answer has always been a resounding *shrugs*

See most kids, my tiny overachiever, who have neural tube defects in the location that you did, do not survive. Most die before or after birth. Such a small handful of children with posterior encephaloceles survive that there is almost no data about them.

You are not only a million dollar baby, but a one in a million child.

For you are easily the smartest of my three very smart children. The connections you make between things. The way you understand concepts that puzzle most adults, that is nothing short of a miracle.

You are nothing short of a miracle.

In your short years, Amelia, you have done more good than any three-year old should be capable of. While your birth shattered me, you’ve helped assemble me back into a new person; a better person. You have given hope to people who have never met you, hope for parents whose children have the very same diagnosis – encephalocele – that you do.

You are the sole reason that Band Back Together exists. Through The Band, you have saved lives – actual lives.

That is nothing short of a miracle.

So to you, on the day before your third birthday, my darling girl, I want to thank you. For all you have given me. For the light you’ve bestowed upon the world, and your light – a light that continues to shine.

May your light always shine brightly, Amelia Grace.

Always.

Love,

Mommy

10:52AM, my neurologist’s office.

Man, I hope that fish eats some more rocks. That’s hiLARious when he spits ‘em back out.

I’d really like a fish tank. Salt water, tho. Freshwater fish poo too much. Shit, I’d probably kill them. Then I’d be depressed for months.

10:55AM, my neurologist’s office.

BUBBLES! BUUUUUBLES! BUBBLE BUBBLE BUBBLE!

Man, fish are hilarious.

11:05AM, my neurologist’s office.

Fuck, this is gonna be some shitballs news. I really should’ve put this off another day.

OH, hell, he’s asking me a question about my headaches. LOOK AWAKE. Nod. Yeah! Nodding is always good. WAIT, I just told him my headaches are getting better. RETRACT, RETRACT, RETRACT.

11:10AM, my neurologist’s office.

He really does look like a cowboy from a spaghetti Western. Wait, what the hell does “spaghetti Western” mean? Either way, he totally does.

Shit, more drugs. And these side effects. If the headaches won’t kill me, the treatment fucking will.

11:12AM, my neurologist’s office.

Is he still talking about side effects? I’m getting depressed. I know, I should think about something else.

Why is Jessica Simpson, reported to be due “this spring” so huge? I don’t believe it. I bet she’s popping out a kid any moment now.

11:17AM, my neurologist’s office.

Did Jay-Z and Beyonce REALLY shut down an entire NICU for their baby? That’s some bullshit.

hums, “it’s a hard knock life.”

11:22AM, my neurologist’s office.

He’s yelling at me for not getting a blood test done. Fuck. What was the test again? I love tests. Just yesterday I took an IQ test – I’m pretty sure I failed.

Should I tell him about my IQ test and ask if that’s what he wanted? NO. Bad call, SHUT UP BECKY.

11:24AM, my neurologist’s office.

Damns. More drugs. And a side effect that can kill me – another one. Lords.

THINK OF THE BUBBLES, BECKY. BUUUUUUUUBLES.

Not working. Imagining my funeral.

People better be crying at my funeral. None of this – “celebrate my life” bullshit – I want tears. REAL TEARS. I will PAY people to cry if I have to.

Shit, I wonder what the going rate is for funeral criers.

Hrms. Would I find them on Craigs List? That seems to be the best place to find ‘em. Fuck. They took out Craigs List personal ads. Fuck. Now I’m gonna have to find a real job.

11:36AM, my neurologist’s office.

Ooooh! My brain is rewiring itself to become better at circumventing my migraine meds. That’s almost robotic.

Wait. No. That means my brain is becoming resistant to it. That’s not good.

11:42AM, my neurologist’s office.

Woah, he gave me a lot of instructions and all I can think is: “when is Jessica Simpson REALLY having her baby?” This is not good.

Ooooo! Bubbles!

I get a handful of those address labels throughout the year. Not ones that I order or anything, but the ones that various charities send to me to elicit me to send them cash. (if I ordered them, they’d probably have anatomical parts or the three wolf moon on them or something)

They’re usually corny things, ladybugs and smiling faces and shit. So normally, I toss them into the recycling bin, knowing I don’t exactly want to say that my name is “Mrs. David Harks” or anything. Because believe it or not, when I got married, I KEPT A NAME OF MY OWN.

Anyway. Not a huge fan of those charitable stickers.

Don’t get me wrong – I donate to a couple of charities religiously: Now I Lay Me Down To Sleep and March of Dimes (soon enough Band Back Together!), but I don’t have the fundage to donate to every stinking thing that wants my cash.

Yeah, I’m looking at you, Jimmy Motherfucking Wales.

That’s why, when the Sarah McLaughlin “Angel” song pipes up on one of those ASPCA commercials, I have to turn the channel before I start throwing wads of cash at the television screen. I mean, could they GET any more tear-jerking? I think not.

(dramatic foreshadowing) Rather, I THOUGHT not.

So quickly, I change the channel and pretend that I’m not weeping into my Diet Coke. Because Lord knows, I cannot afford to pay off yet ANOTHER person to prevent them from telling the world that I do, in fact, have feelings.

But last night, I saw that I got yet ANOTHER set of address labels. Addressed to me: Ms. Becky S. Harks. Finally, my ACTUAL name. I could USE those for the Christmas Cards I’ll forget to send!

“No,” Ben and Daver both chimed as I opened it. “YOU DON’T NEED TO SEND THEM MONIES.”

My resolve strong, I was all, “I’m too GOOD for charitable tactics. I can TOTALLY use these stickers WITHOUT forking over wads of cash. I CAN FUCKING DO IT. EYE OF THE MOTHERFUCKING TIGER!”

And then I saw it. The letter.

Yeah.

You got my formerly sick kid’s NAME on top of your letterhead. Nice job. Now I HAVE to give you money.

Jesus, could you stick the knife in any deeper?

“Guys,” I said, tears pouring, “I have to send them mah monies.”

“NO,” they said, almost in unison. “Becky, c’mon!”

“LOOK.” I thrust the paper into Ben’s hand. Immediately, his face crumpled, his eyes just a little moist (he clearly never paid me off to tell the world he doesn’t have feelers).

Then I handed it to Daver, whose face did a similar crumple.

“Okay,” they agreed. “You do.”

It looks like you’ve won this round, St. Judes.

Jimmy Motherfucking Wales? You can blow me. Hard. In fact, I sorta wanna to pull a John C. Mayer on you now. WATCH OUT JIMMY FUCKING WALES. I’M ON TO YOU.

Pranksters, you have watched my daughter grow tall and strong. You have cheered her on, loved her from afar (and from – in rare cases – close by), and helped her by helping me. You are the Prankster Army of aunts and uncles she so deserves and one day, I hope that you all can meet my Princess of the Bells in person.

I wanted her to tell you something that she’s been waiting a long time to say:

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.”

——————

Charity posts. ICE CREAM. DO IT, yo!

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)

When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.

I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.

Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.

Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.

When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.

It’s hard to believe that my daughter is now a patient.

In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.

Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.

I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.

I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.

For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.

Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.

At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.

Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.

Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.

Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.

I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”

And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.

Shine on, you crazy baby, shine on.