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:

Encephalocele - 2 years later

Amelia Grace

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

Encephalocele Surgery

Amelia's Scar

Encephalocele

The Shirt Says It All

Encephalocele

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.

Comments = full of the awesome. Like gravy. I can haz an RSS RSS feed .

62 Responses to How The Light Gets In

  • Your daughter is beautiful. So happy you’ll be providing some help and support to people experiencing the same things you and your daughter have been through. Can’t wait to check out future posts.

  • Kev says:

    Beautiful, true and inspiring.

    Thanks x

  • Allison says:

    I read the whole post, really I did, but the BEST part about the whole post was the tag “jenny mccarthy can suck my dick” spit my red wine through my nose!

  • Allison says:

    Have you noticed how I always post the first comment? Nothing says pathetic loser with laptop attached to her typing fingers like being the first commenter every damn post. I think I’ll get a tshirt made…

  • Kristin says:

    Again hats off amazingly written. That is my goal this year is to write more this year. It is cathartic for me and I NEED it. I need to find MY light. Cause it is so very cold and dark where I am right now. So I will join you in 2011 with my skeletons. Some only at the Band cause some of them I am only comfortable reveling there. But others for all the world to see.

    And Jenny McCarthy Yeah I hate her because of her righteous know it all attitude. Your kid has Autism. Not because of a shot get over it. Deal with it and accept your kid as he is perfect as he was made. I hate her and her stupid soap box. She just makes me a little angry. Stopping my rant now LOL.

    • Your Aunt Becky
      Twitter: mommywantsvodka
      says:

      I’ll send out the Prankster Signal when the Jenny McCarthy-ites attack. COME BACK WHEN THEY DO. PLEASE.

      • Kristin says:

        Oh you know I will be here. I will be the Robin to your Batman. Or whatever cool Nicknames we come up with. She makes me stabbity as you call it. She is a true whack job. And I totally missed that Jenny McCarthy can suck my dick BRILLIANT LOVE IT!!! I got your back though.

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

    YES!

  • Rebecca says:

    Psuedoarthrosis of the tibia and fibula, LE Vargus, plexiform neurofibroma, sphenoid wing displasya, Neurofibromatosis Type 1. All of which my son suffers from and is currently in pain from …something. Where are the heartflet books on this? Where are the TV commercials on this? Where are the famous celeberties speaking out about this? Where? I blog about this sometimes. But I’m just a little blogger.

    • Your Aunt Becky
      Twitter: mommywantsvodka
      says:

      You never, ever know who is reading your words. Keep writing them, Rebecca. Seriously, keep on it.

      Maybe you need to start a site for parents with these conditions. Or write about it on Band Back Together. Somewhere, someone is going to need your words. I know it.

  • Nancy P says:

    I have no words, no words, to thank you enough for this post and the one yesterday. I don’t have a chance right now to post my story as I am at work but in a nutshell my 24 year old son has, well we don’t know what the hell he has. A child psychiatrist we took him to when he was around 12 said he had never seen a child like Alex. The best they could come up with was Asperger’s & PPD. We stopped sessions after only a few because Alex was FURIOUS at us. THERE IS NOTHING WRONG WITH ME!!!

    The self loathing I have for myself that maybe just maybe I could have “fixed” him, (see Jenny McCarthy etc.) is overwhelming. I should have, could have, SHOULD HAVE, done things differently.

    Also, just knowing that bandbacktogether is there when I can find the place and time to let this shit out is such a comfort.

    You just have no idea.

  • Meg says:

    You make me want to do the motherfuckin’ macarena with meh closet skeletons!!! I can’t imagine ever having to put up with the frustration of other people informing me about something they know nothing about. I know its totally not the same thing but I always get an earful about my husbands back injury and his legal issues with a certain evil corporation who shall remain nameless(rhymes with shwal-shmart) or how I should totally get a job and not be on welfare never mind the fact that I have 3 small children under 3 who need to be cared for. You hang in there you are an amazing, strong woman and dude…your shit gets me through my shit. There are some days I’ve just about had it and I see a new blog you’ve posted that somehow strengthens my resolve to get through another day sans the mass murder previously on my agenda. :)

  • “The personal is universal…” Can’t remember whose quote that is, but you’re right about taking the skeletons out of the closet. It allows others to do the same.

    Amelia grows more beautiful every day.

    Happy New Year, my friend.

  • Mel says:

    Thanks for the reminder Aunt Becky. It is an absolute necessity.

    ((Hugs)) to everyone who needs them. We are who we are, by the stories we have.

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  • So believe me when I say that you have inpsired me so much this year that I am not being all hokey and cheese ball (although cheese balls are delicious).

    Thank you. Thank you so much.

  • Chelle says:

    I am encouraged.

  • Wait… we don’t pay to read this?

    Then who was that man who took my money and my mom’s old cookie jar?

    WHO??

  • andygirl says:

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

    best. line. ever.

  • Amy says:

    You, your blog(s), and your children are amazing. You manage to use both humor and sensitivity for even the hardest of topics. And your last two posts have had me tearing up. Thank you.

  • SharleneT says:

    The greatest thing about blogging is how much closer we are than when it was just a kaffeklatch. We’re free to express ourselves without having to fit into a neighborhood mold or the pressure of our peers… Just let it go and the devil take the hindside… Although we can’t take all your pain on our shoulders, giving you a platform for sharing your pain does make it easier, a few moments at a time, I hope… (Let me correct, one thing, it was Temple Grandin not Grandig)… {{{HUGS}}}

  • Tershbango says:

    Amelia is a dolly. Her eyes can just slay you, can’t they? ;)

  • Josefina says:

    Oh, how I love you! Thank you for the encouragement.

    (I also really love Sharlene T’s comment.)

  • You know, i really liked Jenny McCarthy, until I saw her for the 8 billionth time telling me that Autism is caused by vaccines and if I have a child with the condition, I can change them with a diet. For A) I’m really glad that whatever she did helped her son, but it’s not a one size fits all cure. and for shutthefuckup) the mommy wars are bad enough without someone insinuating that we may have accidentally caused our children to be “different” when we were trying to do what we thought was right.

    And? I’m sick and tired of feeling like I have to hide the fact that I am in no way shape or form June Cleaver. We definitely need to Band Back Together and make sure we let others like us know we are not alone! (Haha, I’m so clever…)

  • Anne says:

    I love you Aunt Becky!! I found you through another blog and started reading…I haven’t stopped. Through you I’ve seen your beautiful daughter come through so much. I read her story and I sobbed! I cried the hardest when I read that she was ok :) I love your boys too! They are the greatest kids.

    Aunt Becky, YOU are my drug. I come back everyday, totally addicted.

  • Every time I think my blog is frivolous whining, you rock it out with your warrior leading guns ablazing. And I get all fired up and yell (silently because I’m at work and would get strange looks) FUCK YEAH! Thanks for the reminder.

  • Amelia is beautiful. And while your store is uniquely your own, the feelings are universal. Thanks so much for sharing.

  • Kelley says:

    Let the dance begin! Thanks, Becky, long may you rule…

  • TheTameOne says:

    Holy Crapballs! I had no idea what that encel…. Chiari Malformation thing was. Except I have one!! I just found out a little over 2 years ago and it doesn’t really effect me other than some headaches. God Bless that sweet baby’s heart. You, my darling, are mother of the year. Kudos and hugs and all of that to you!

  • michele says:

    thisyear is almost over (and i am so fucking glad, you have no idea!)…
    BUT.
    2010 was the year i started to really look at blogs and i am forever grateful for that.
    i found your site and others that have helped and inspired me, made me laugh and cry and feel so not all alone, made me think that maybe i have a voice too.

    you rock aunt b…and your children are perfect, as are all of ours.

  • Heather says:

    You have amazing tales to tell. And it is important to get out what happens in reality. Everyone loves to put something in some neat little box so they can describe it and explain why it will never happen to them. We don’t have any experience with autism here (that we know of yet – our boys are 18 months and who knows yet), but I’ve been a NICU mom 3 times over. But my big story is infertility. I hate when people like to put it in a neat little box, “Oh you were working on your career!” to explain why I had my children later in life. No, I don’t think so it was more of, “I’ve been crying my eyes out since I got married at 23 as to why we couldn’t get pregnant.” I’ve never had an oops pregnancy, I’ve tried IVF more times than I can count as well as lots of holistic medicine practices. I think it all helped and now we had one child when I was 29 and the next two when I turned 38.

    BTW, your children are adorable. Hug them as often as they will withstand it.

  • Elizabeth says:

    Hi, I’m new to your blog, and I look forward to it everyday. I also barely know anything about encephaloceles except for your blog, and I’m a dentist – one who is about to go into specialty training for pediatrics nonetheless, so thanks for your blog, its awesome.

    • Your Aunt Becky
      Twitter: mommywantsvodka
      says:

      I’m honored to know you. It’s a TOTALLY rare condition and Amelia’s the poster child for awesome outcomes. She’s a miracle. I hate that term, but it’s true. It’s nice to have met you.

  • kbreints says:

    HOLY SHIT. I cannot believe your daughter is so big! What a beautiful little girl :)

  • Barbara says:

    Your words are so encouraging.

    I’m working with a friend I met online to start a site to raise awareness and money for endometriosis research. We’re hoping to launch it first of the year. I don’t have the disease, but after meeting her and so many others online that have it, it just felt like a good thing to do. Without the blogging world, I would have never met these women or gotten the opportunity to do something so cool. I’m thankful for blogging everyday (as cheesy as that sounds).

  • KaraB says:

    Aunt Becky, you are the bestest! After all that you’ve had to go through with Ben and Amelia (and look at how awesome they are now), you’re still there to help those with no voice or hope. Keep it up and know that your Pranksters are always right here with you!

  • Maria says:

    HOMFG Stop. Making. Me. CRY!

  • Camille says:

    Posting that photo of your beautiful and wonderful daughter Amelia’s surgery scar is one of the most empowering and friggin’ bravest things I’ve witnessed in a long, long time. And the post yesterday…fucking outstanding. You’re the best Becks. We’re with you on this…and can bet your ass that we will always have your back.

  • Heather says:

    I love this post. As you know, when I got divorced, the day it was final I let the skeletons out of my closet. I got so many comments from so many people who had been reading for awhile and had NO idea. Then a few months later I wrote for a Violence Unsilenced. It was amazing to be able to talk about it. To get it out there. To give a voice to something. I’m so glad you give a voice to the things you struggle with and let other people know they are not alone.

  • Ann says:

    You are amazing! I don’t comment enough but I read and I root for you and your family and I relate, laugh and cry. Meeting you and finding your site as a result of blogher really made for one of the most useful parts of that whole weekend. I’ve gotten so much from your posts. T Thank you, Becky!

  • a says:

    We often feel like it’s better to keep things to ourselves to avoid pity, but how are people supposed to learn if we never tell them things? Great job…

  • Mrs Heb says:

    Aunt Becky I’ve been reading your blog for about a year now. And I am in AWE of you. You fucking rock! You make me feel inspired and empowered, and I just wanted to let you know! Thank you for your awesomeness!

    Mrs Heb

  • Jenn says:

    Knowing you makes me happy.
    That’s all.

  • Jolie says:

    I don’t have a child with any letters behind their names, but I love to read your posts. It’s not that I have a common thread with “the diagnosis” but with being a MOM. It doesn’t matter what challenges life throws at you, it’s how you HANDLE them that make you You. And I like You. I like the way you post things that crack me up, and the way you post serious things like being a voice for your children that make me reflect and think. I found blogs this year and wish I’d found them sooner, but all things for a reason. Every morning I look forward to seeing what you have to say. And I thank you for all you’re teaching me. Through the laughter and the tears, I keep coming back for more! You send up the pranksters signal and I’m there. Moms gotta stick together!!

  • Thank you. I do a blog and was pondering what to write about today. I also am guest blogging at no fewer than four spots in January. I WILL pull my skeletens from the closet and write about them. I WILL give them a voice.

    Thanks again.

  • pattypunker says:

    i love amelia’s “rock on” gesture in the heart picture!

  • katrina says:

    you are fuckinamazing!! and amelia grace….she kicks ass, like her mom, obviously.

  • Kristin
    Twitter: dragondream
    says:

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

    Can my skeletons dance with yours? That would thrill me to no end. and, btw, you are beyond amazing.

  • Your daughter is a beautiful little girl and your post about Autism the other day was wonderful.

    And I hate when people like JMC start spouting off stuff, because they are simplifying something that is so very complicated.

    You keep on and I am sure the right people will hear you.

  • JenM_17 says:

    So…I work at the frontdesk of a hotel, and I just scared a guest. And a coworker. Apparently, going from sniffling as I try to hold back tears DIRECTLY (read: 0 to a BAZILLION) to snorting chewed-up Reese’s out of my nose in laughter (more like a guffaw, to be honest) is NOT what the handbook mean by “outgoing”. oops….

    But I can promise you this: my skeletons are going to beat me at getting more exercise this year. B/c those skinny bastards will be breaking it down like no one’s business as soon as I get home. A beer, BB2gether and some be-bopping bony b*stards sounds like a helluva good night, huh? Love you, Aunt Becky! And thank you for the phrase that will keep me going.

    :giggle:: tango-ing tarsals :giggle:

  • Anne says:

    I feel like I’m playing two years of catch up with your blog since I only found it after our prenatal diagnosis of encephalocele. But this feels like the best kind of catch-up. Not only are you showing me what can be, but that when this happens to us, we must give it a voice. I’ve been doing that with Autism for the last few years since two of my sons were diagnosed. Now I’ll be doing it with encephalocele too. Can I be both happy and not that I’m not doing it alone? I love that there are other people who know where I’m coming from. But I hate that anyone else has to live it.

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