Normally The Daver says stuff like, “Why is the cat in the microwave?” and “You can’t make dinner by staring at the cans of food, you know that, right?” so when, in a rousing discussion about turning Band Back Together into a non-profit, he said, “I can’t believe that all of the stuff that’s happened in the past couple years has been a coincidence. You’ve really channeled all of that into something good.” I was stunned.

It was singularly the kindest thing he’s said to me. It was the kindest thing that anyone has ever said to me.

I’ve done a lot of thinking, which, for someone like me who normally thinks things like, “I wonder if I can print out a life size cutout of Billy Mays for my wall on my home printer.” (it is the size of a shoebox, I should add) I’ve been thinking about the past. It’s not surprising, considering that Amelia’s birthday is coming up in a few days, that I would be more contemplative than normal.

That stupid baby shampoo commercial says that “having a baby changes everything,” and I always answer the television (because it can totally hear me) “yeah, no shit, Sherlock,” because it does. Of course it does. Of course, the baby shampoo commercial is also trying to make you feel like having a baby makes the world a more brightly-colored, soft-focused place where mothers stand at the sink, lovingly smiling at their cooing – but never colicky! – baby, bathing in that lovely lavender shampoo.

Go ahead, I’ll wait while you snicker.

Okay, maybe that’s just me snickering snidely.

The person I was before I popped Amelia out was not the person I am today. I am not the person I was before I delivered Ben or Alex either, of course, but the person I was before I delivered Amelia was the one most radically altered. Even more so, I think now, than the single twenty-year old who popped that bobble-headed black-haired baby out.

Part of who we are is who we think we are. Part of who we are is reflected in the way other people see us. Part of us is who we actually are. And part of who we are is who we want to be.

It has taken me thirty years on this planet to finally be able to say that I am. I am. I finally am. I am – more or less – exactly as I should be.

I had to lose it all to finally become who I am. I had to lose my marbles to find myself.

I am now found in no small part thanks to you, Pranksters. For that, I owe you a debt of gratitude I’ll never be able to repay.

I guess that baby shampoo was right. Having a baby changes everything. But it’s probably not the way they meant it.

(the blobber, Aunt Becky, as she was, February 3, 2009)

(the blobber, Aunt Becky, as herself, today, January 19, 2011)

It began with a tiny pink lollipop, really no bigger than the tip of my finger.

I saw it sitting quietly on the counter as I stood there in the kitchen, seething; a drinking glass clutched in my hand, poised to throw at the wall, the blood pounding in my ears, drowning out all other noise.

The rage had come from nowhere it seemed, and in an instant, as I looked at that tiny pink lollipop, part of the My Little Pony advent calendar I’d bought my daughter (apparently boys are the only ones who should be taught to rob banks at Christmas), it evaporated. What came next was a sorrow so deep that it shook me to my bones, and I nearly fell to my knees as the sobs wracked my body. I wept, consumed with the kind of feral cry that reminds us that we’re not really that far removed from our animal ancestors.

In that instant, I was transported back to that room. The room where no pink balloons floated. No baskets of flowers were delivered. No visitors came to offer their congratulations. There were no happy phone calls made or cheerful cards read. The room was a barren hospital room overlooking an ice-covered roof and had two – not three – occupants. Both sat on the bed, weeping. Later, it was only one.

I think about that room a lot. I spend a lot of time with my ghosts, roaming those halls and reliving those uncertain days after my daughter was born.

But it is that room that haunts me most.

I want so badly to go back to that room and take that weeping, fractured, shattered woman into my arms and say to her, “Your daughter will live. She will live. She will go on to do amazing things with her life and so will you. Amelia will do much good for so many people. You will take all of these broken pieces and you will rebuild into someone else. Someone better. You will take all of this pain and you will use it to fortify you; to guide you; to help you find yourself. Please know that you are so loved.”

Because I will never forget how alone I felt. Maybe that is where that chasm of rage came from. That secret place, that land of tears and sorrow, that is ours to face alone. It was in that room, where no balloons bobbed and swayed, where no one celebrated Amelia’s life, that I sat alone in my own land of sorrow.

Seeing that lollipop on the kitchen counter brought it all back. It took me back to that room, the most uncertain, horrifying time in my life, and it reminded me of the days when no one celebrated her birth. The memories left me gasping.

I’d wanted so badly to celebrate her first birthday. To throw an ebullient celebration of Amelia’s life, a Fuck You to the Universe. I even had a CandyLand theme picked out. But I was so stuck in that land of tears that I simply couldn’t. It broke my heart.

Amelia will be two on January 28 and I have not planned a party for her. I want to. But it’s hard. This particular party is hard for me. It dredges up memories of some of the worst days of my life.

But I think that is what I need to do; throw her a birthday party, a REAL birthday party, the kind of party she deserved when she entered the world and defied all odds. I’m struggling, battling my demons, my dragons all rearing their heads as I work to slay them.

I will do it. I must do it.

I may never be able to go back in time to reach those two people in the room where no one celebrated her birth, but I can show Amelia how many people celebrate her life.

I will fill the rooms with balloons and shout to the world from the rooftops that this, this was the day that my daughter, Amelia Grace, the Warrior Princess of the Bells, she arrived.

And nothing, not one damn thing, has been the same.

Then I will sit back and watch my daughter giggle and snort and dash about, her curls bouncing merrily as she chases her balloons; her life finally, at long last, celebrated.

You’re annoyed.

You shift uncomfortably in the ottoman as you check the time on your iPhone and note that the doctor is now forty minutes late. You try not to think about all of the barf germs that you’re now merrily collecting on your favorite ugly pajama pants as your daughter, the one with curls like a halo begins to pull on her shirt, the one she insisted upon wearing, indicating that she, too, is highly annoyed and would like to take off this shirt and GO HOME, thankyouverymuch.

Your toddler son is engrossed in a game of Angry Birds on another iPhone but stops his game for a couple seconds to cough that worrisome I-smoke-three-packs-a-day cough that’s sent you all on a field trip to the doctor in the first place. You frown but quickly turn it into a smile. Even with this annoying bout of what you think is bronchitis, everything is just as it should be.

You are happy. Finally.

You think about the first time you were ever in this pediatrics office; nearly two years ago now. Your new infant daughter tightly clutched in your arms, the frightening MRI images of her precious head on the computer, the referrals to the new neurologist – one who will take your insurance – and you remember how you wept. In public. Again.

You remember those horrible, heartbreaking days well, although the colors are fading into the background, the sights and sounds and triggers all fading into a dusky shade of their former vividness.

You won’t forget. Ever. You know that on your deathbed, you will remember, as those are days you can’t forget, but now, they’re losing their power.

Life is moving forward.

You think of the year that seemed like it was never going to end. The year ends tomorrow.

All of those things you thought you’d never leave behind, all of those things have been put squarely to bed.

Those dragons have been slayed.

Certainly, there will be new dragons to battle, but for now, you stand with your daughter, the one with curls like a halo, proud and triumphant over the bodies of the fallen dragons.

A smile plays on your lips as you think of what’s to come. Of the people you’ll meet and the people you’ll learn to love. Of all of the things that you’ll do with the next 365 days. This year, you know there is hope because there is always hope.

The doctor finally comes in and greets you by saying, “I can hardly believe you’re the same people!”

And you smile and laugh, because you know just what she means.

I wanted to thank you for your incredible display of warmth and kindness on my post about autism. When I say things like, “I’m honored to know you,” I’m not being a hokey ball of cheese, I mean it. I’m incredibly lucky to have such an amazing group of Pranksters in my life. Thank you. To everyone who commented, tweeted, emailed, or read the post, I thank you.

Historically, it’s been hard for me to talk about autism and how it affects us because I simply don’t know what to say about it. As so many of you said (and like so many other disorders, diagnoses and conditions) it’s not the same sort of disorder for everyone, but because it’s so prevalent in the media, everyone is an expert. That makes it difficult when “experts” like Jenny McCarthy and the guy down the street want to lecture you on the danger of dioxin because they “know” better than you do.

Simply put: they don’t.

But when it’s something that’s so close to your heart, no, when it’s PART of your heart, it’s not something you just want to lay out there for Rando Joe Schmo to trample on.

I was wrong.

Because it dawned on me as I read all of your incredible stories what power we have. Each of us. What a unique platform we have at our disposal.

Before, if we wanted to be heard, we had to write a book, hope it was interesting enough to get picked up by a publisher (whose bottom line was, of course, big fat dollar signs) hope that the book was read by enough people to be considered a success and then maybe, just maybe, we’d be heard by the Right People. Newspaper and magazine articles went through a similar process, only to be read by a smaller audience. The common denominator was that people had to pay money to access the words you wrote, IF you were enough of a success to be published at all.

But in the era of self-publishing, it simply doesn’t matter what your pedigree is. People who’ve never written a single word can start a blog with a few keystrokes (see example: Mommy Wants Vodka) for free. It costs nothing to read the words I write. Not a cent. Sure, you may pay for your internet connection, but that’s different.

You know, Pranksters, I’m not a fan of self-centered blog “ZOMG BLOGGING IS THE BESTEST!!!!!!!!!!” circle jerks, but I’m constantly amazed by how unique our platform is.

We can give a voice to those who have none. We can give a face and a name to things you’ve never heard of. We have power to do so much good.

People read us to connect with other people, not the cold, clipped, polished words in a magazine. Our blogs have the human element that would be neatly left on the editing room floor of any newspaper. We’re too raw, too unfiltered, and too real. But it’s our flaws that make us interesting and our pain that binds us together.

If you’ve read my blog for any length of time, you know what a neural tube defect is. You also know my daughter, Amelia, was born with a very rare one called an encephalocele. It’s likely you hadn’t heard of it before you met Your Aunt Becky and her daughter Amelia. I’d learned of neural tube defects in school and I knew of encephaloceles…but typically in conjunction with Chiari Malformation.

Now you’ve all heard of it. You know that THIS girl had one:

Amelia Grace

Over the past two years, I’ve given encephaloceles a voice. And a face. This is what an encephalocele looks like.

Amelia's Scar

The Shirt Says It All

Sparkle Princess of the Bells

Through my blog, I’ve met people who have been prenatally diagnosed with encephaloceles. I’ve met adults with encephaloceles and other neural tube defects. I’ve become a March of Dimes Mom. I’m planning a resource website for those with encephaloceles because none exist. I’ve become an advocate and a voice for encephaloceles.

I became a voice because it was the right thing to do.

You just reminded me that it’s still the right thing to do. Now it’s my turn.

So this is me, Your Aunt Becky, encouraging you to speak your truth. Stand up tall and proud for what you believe in. Give a voice to those who have none and a hand to those who may not think to ask.

Pull those skeletons out of your closets and make them dance the motherfucking tango.

(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)

It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”

The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.

Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.

You prayed with all of your soul.

Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.

You held that bag and wondered if that would be all you had left of her.

Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”

It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.

You hope she knows that this necklace is very, very important.

Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.

Your soul broke.

Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.

In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.

Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.

Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.

When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.

All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.

Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.

A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.

But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, always photographic, can recall everything with the sort of clarity that makes you relive those days constantly.

You are forever delivering that sick baby.

Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.

The sadness is omnipresent and yet nowhere. It is the new world order.

Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.

You must return. New problems, a new specialist, means one thing: you must face your demons and return.

A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.

But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.

So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.

Ever.