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:

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

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.

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.

It’s pretty safe to say that no one thinks that I’m very bright. I mean, I routinely give myself the Nobel Prize for Awesomeness just for existing, but after admitting that I have been inadvertently getting myself loaded in the morning WITHOUT REALIZING IT, I don’t think I’ll be winning any sorts of genius competitions. Mostly because I don’t know that there ARE any genius competitions, and let’s face it, if I knew of any, I’d just drive by and whip donuts at the contestants.

I’d like to blame it on my almond-extract-spiked-coffee, but really, this weekend, it’s actually just that I am that stupid.

So I’m going on this cruise, right? And I knew that I had a passport because I’m all wordly and shit, but I neglected to actually see if my passport was up-to-date. Turns out, it expired two months ago. Just realized it, yo.

Well, no worries, Pranksters, I can get use my birth certificate, right? Well, apparently I was dropped onto this planet by a mother-ship because no one actually has a physical copy of the record of my birth. So I rushed around like an asshole this morning and had to beg Lake County, IL to send me brand new copies certifying that I was, in fact, born of this world.

*crosses fingers wildly*

This weekend was The March of Dimes March for Babies, (not to be confused with the March ON Babies, which would be a completely different kind of march) and I’ve been looking forward to it since last year. I would have marched then, but I was kind of a quivering mass of Jello and I could barely organize myself to walk to the bathroom, let alone walk for babies.

But I’m not really a “details person.” I’m just sort of the person who organizes things broadly and let’s other people worry about the other things. Like dates, or plane tickets, or whatever. I assume that I’ll figure it out, or if I don’t, whatever.

So I thought the walk was on Sunday, although I didn’t specifically LOOK at the date and like circle it in big puffy hearts on the calendar, right? Then I made an appointment to get my eyes checked on Saturday and The Daver was all “ZOMG, THE WALK IS THAT DAY, YOU MORON!” and I was all, “Whoops!” sheepishly because that really is something I would do.

I canceled the appointment, got the kids off to my mom’s house on Saturday morning, printed out the sponsor sheets and got in my walkin’ gear. We showed up to the walk site and….

….

….

No one was there.

Yep.

Turns out I was motherfucking RIGHT all along. It was pretty hilarious to sit in the empty parking lot and laugh at The Daver, who was FURIOUS GEORGE (I should add that I was not furious when I thought that I was wrong).

We used the opportunity to sneakily eat some motherfucking breakfast without our crotch parasites and then ambled on home. BRILLIANTLY, I took it upon myself to do a bit of Bushwacking because the best thing to do when you are about to walk 5.5 miles with a foot injury is to do some really strenuous digging. Of course, I hurt myself. Of course it was with the pickax. Really, no one is surprised.

I mean, it’s just a giant knot on my leg and I knarfed up my foot again, but really, did I HAVE to get out there and attempt to dig out the bushes before the walk? CLEARLY I did. Anyway, the bushes, like my stupidity, are going nowhere. Those motherfucking roots are of The Devil. If I see the person who invented evergreen bushes, I will punch him in the testicle.

Sunday dawned beautifully, and while I may not have been able to move comfortably, I was beyond happy to be walking, although I was eying Amelia’s stroller jealously.

The park where the March of Dimes walk was held was the very same park where we, in high school, used to hang out and party every night, so to be there in a very different fashion was completely discomfiting to me. But when we walked in and saw all of the March of Dimes families gearing up to walk, I’m going to admit to you that I got choked up.

Just knowing that we were there–that we’d all survived–it made it all that much more real to me. I don’t sit around all day every day thinking about my daughter or about all of my nieces and nephews that have been born too soon, or stillborn, or those who have passed. They’re always with me, but I couldn’t possibly function if I thought about that all the time.

But standing there in the park, the ghost of who I was and who I am, now a March of Dimes Mom, beside each other, my daughter chirping away in her stroller, her scar very visible in the morning sun, it was as much a celebration of life as it was a mourning of what could have been and what once was.

I walked for all of the names on my Wall of Remembrance, all of my nieces and nephews on that wall; I walked for my friend Heather’s daughter Maddie Spohr; I walked so that some day all babies will be born healthy.

And I walked proudly with you, my Amelia, who defied the odds. Born with a very serious neural tube defect, an encephalocele, that should have killed you, you now take life by the balls and you make it your bitch. There’s nothing about you that doesn’t make me proud to be your mother.

Because you will continue to help give a voice to those who cannot speak. You will give a face to babies who are sick or dying. You will help give hope to those who need it most. You will help make the world a better place.

I know this to be true, love, because you already have.

You let your light shine, baby girl. Clearly, you’re showing us the way.