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)

102 thoughts on “A Little Less Conversation, A Little More Action

  1. Aunt Becky you done went and made this coal black heart cry. Your passion is astounding and your story is inspirational (read it awhile back). I hope you are able to reach as many people as need it. You have the drive, the information and the domain but you also have a butt load of pranksters that are right here rooting for you. Go kick some information super highway ass.

  2. i love you, aunt motherfucking becky. i think it’s great that you’re trying to be there for people with band back together. i don’t know dick about neural tube defects (well, i only know what you’ve shared) but they sound like tons of bullshit. i think it’s more full of the awesome that you’re going to set up a site just about neural tube defects.

    also. even though i failed miserably in my original attempt at pulling a john c. mayer, i am ready and willing to john c. mayer for charity.

  3. Aunt Becky, I had some similar thoughts when my mom had throat cancer. Actually, she had a tumor on the base of her tongue (yep, there’s a difference) and it was hard to find any kind of support. Oh sure, there were plenty of websites devoted to cancer IN GENERAL, and gazillions devoted to breast cancer (yes, I do think breast cancer is important, but so are oral, head, and neck cancers!). I finally found ONE website devoted to nothing but oral, head, and neck cancers (there may be more, I dunno, but all I could find was that one). I said all that to say this…you’re amazing. Your daughter is amazing. When you get something out there, let me know so I can post a link on my blog, ok? I want to help spread the word.

    1. I just lost a friend to ovarian cancer and to my shame I get mad EVERY SINGLE TIME I see a damn pink ribbon. Or a Little Red Dress.Even though I’m glad people are paying attention to breast cancer and heart disease etc, I want a damn ribbon for Lucy, too. Why doesn’t Lucy get a ribbon? She was 52 and went from happy pink cheeks to Auschwitz in less than 5 months. And there’s no damn billboards for it.

  4. I wish I had any information. Sadly I do not. But like you it makes me sad and angry when there isn’t enough information about something that is so very important.

    On a completely different not, I just finished reading through your whole archive. And I love you even more than I did before. That’s right I’m all gushy and stalkery. But you are awesome. And so are your kids. Especially Amelia, she is such an inspiration. Keep kicking ass and taking names baby girl.

  5. forehead wrinkles are bullshit, especially when you catch them out of the corner of your eye in a mirrored store window while walking down the street on a rainy monday.

    not bullshit: chick peas. yum-o.

    1. I’m with CycleNinja.

      And good for you for doing this. And still keeping yourself and your frickin’ razor wit to go along with it.

      I have no information to contribute, unfortunately, but if I find anything I will let you know.

      Keep on truckin’!!

  6. That is fucking bullshit. I’m so sorry that it’s such a struggle to find information.

    I’ve got nothing, EXCEPT. I would love to have afternoon dance parties for moms [and their families, if you must]. Not shitty kids’ music, but actually dance music. With fun! And booze! But no smoking or fog machines, because ewww.

    So that’s my contribution.

    I think you all are fucking AWESOME.

  7. Maybe you can email your plethora of neurologists’s Secretaries or something?
    Or maybe there is some sort of expert on this somewhere, who kicks ass at fixing it, and they can tell people about you and then they can in turn email you their stories and then you can build a website off of that?

    1. That’s exactly what I’m hoping to have happen. Because this has to change. The more people I can bring together, the better. So. ENCEPHALOCELE, ENCEPHALOCELE, ENCEPHALOCELE. NEURAL TUBE DEFECT, NEURAL TUBE DEFECT, NEURAL TUBE DEFECT.

      With a John C. Mayer thrown in for good measure.

  8. You know, it’s kind of good that there are only 375 babies per year. Bringing that down to zero would be awesome. Since you’ve done the research, is this one of those insufficient folic acid issues that most neural tube defects get lumped into or is it unknown cause? Are you going to start going around pouring orange juice down the throats of women between puberty and menopause? Do I have to start saving bail money?

    How incredible that you are going to start a resource for this…

    1. It’s got the same link to folic acid deficiency, yes. But there’s a genetic link, too. MAYBE. No one knows. There’s very little research being done. All that money is funded into hotter diseases now. Which? BULLSHIT.

    1. Oh my god I HATE turkey bacon!
      Especially because whoever was cooking it while I was a child/young teen would be all like “(Insert name here), we’re having BACON tomorrow!” and not say it would be turkey bacon, and so I would get all excited because my mom was a vegetarian and we didn’t even have fake meat or anything in the house because she hated the smell, so bacon was like the Holy Grail to me, and then it would be this awful thing made of the one meat I cannot stand. Well, I also don’t eat animals that I consider to be pets, or cute, such as ducks, bunnies, baby anythings, deer/moose, but that is because it makes me sad, not because it is disgusting.

  9. You are amzing.
    ex-wives are bullshit. I’ve got one I wish would melt into thousand island grossness. (Okay. I PERSONALLY do not have an ex-wife but my hubs has a wretched one.)
    Gluten-free is also bullshit. I’m off to eatrice cakes. As far as I can tell that’s the ONLY thing I can eat that doesn’t involve complex cooking.

  10. I love that little face, and wouldn’t even dream of stealing a cuppity-cake from her! I love that you are fired up and thinking of the people looking for support and finding NONE. And the numbers affected? So few, but for each of those “375” this is a huge thing. And you will touch them with what you’re doing.

    Take that, stupid John Mayer.

  11. Becky,
    I linked this post on my FB page — most of my readers have special needs children, so maybe someone will know someone. My FB post specifically mentions ENCEPHALOCELE, ENCEPHALOCELE, ENCEPHALOCELE. NEURAL TUBE DEFECT, NEURAL TUBE DEFECT, NEURAL TUBE DEFECT.

  12. I totally feel your pain. Well not quite but I”m close. Our daughter is 20 months old and suspect of having Mitochondrial Disease. Not only is there lack of funding and research to help. There is not treatment or cure. There are very very very very few reliable resources. There are 3 doctors in the entire country that specialize in it. We get ya! Good luck in your quest. We will pray for your efforts.

  13. I think what you are doing is amazing and will be very helpful to those mothers who feel all alone! But more importantly, I’m going to have to inform you that Turkey Bacon is the bomb

  14. I mean thousand island dressing ? Its one of those things I dont even get why they sell it. Its like a bottle o’vomit.
    But my main question is this – how exactly do you ever get anything done in a day ? I would spend 90% of my waking hours pinching Amelia’s cheeks.

  15. I just had to say that this post made me tear up. I could only imagine being one of those women and searching desperately for help, answers, or just some sort of comfort… and finding none.

    Good for you for deciding that the bullshit isn’t going to stand anymore. Everything has to start somewhere.

  16. Love that Amelia would kick your arse for messing with her cuppity cakes. She’s a little Viking – but with very sweet cheeks. Anything lactose free is essentially bullshit (ever try the cream cheese? Phflechk-gag) Right up there with clowns, turkey bacon and John C. Mayer.

  17. My mother in law fries her turkey bacon in regualr bacon grease. She should just get real bacon.

    I’m more than willing to help you research. I’ve got some (educator type) contacts at a children’s hospital. I will see if he can help point us towards some good info.

  18. You know what’s bullshit? Vegan Thanksgiving. WTF. Don’t make Tofurky with vegan “gravy.” It’s insulting.

    Oh, and so proud of you for putting this Band Back Together. It will mean so much to so many families!

  19. Ex-wives sending text messages while drunk is some bullshit.

    YOU, Aunt Becky, are awesome. We already knew this, of course, but it had to be said. Even John C Mayer knows it.

  20. Is this what I do to sign up for your blog?! I hope so!! I have a son with Spina Bifida. It’s funny because I’ve always felt frustrated that there’s so little information out there for us-especially considering how differently each child is affected. Now I’m feeling thankful we have what we have and hopeful that more information will be available for you as word gets out. Your daughter is adorable and I’m so happy that she’s doing well! I can’t wait to read your back posts. Thanks for all that you do to get the word out about NTD’s.

    1. PERFECT. Is that your email address? If it’s right, I’ll be emailing you. Also, to increase my stupid SEO stats, encephalocele, encephalocele, encephalocele. Hopefully now, someone will find their way here through google.

  21. And this, Aunt Becky, is why I know that Amelia will grow up to be a professional ass-kicker who gets shit done. Look at her Mama. You are full of the Awesome! I feel so lame for just having a regular old job. 🙂

  22. Good luck. Stir the pot, girl! I can’t imagine what a huge thing you’ll be doing for the family DESPERATE to find a good outcome and finding nothing except your blog. Cuppity cakes for the house!

  23. Your words will calm a heart and give hope, I promise you this. The PKU community (also less than 400 U.S. births per year – holla!) has an incredibly strong presence on the Internet. They are the people who got me through the early-on, 2 a.m. Google searches.

    Your words make a difference.

    Bullshit? When I hear parents boo hooing the Newborn Screening heel prick.

    Don’t be a prick, get the prick.

    Aunt Becky is my hero.

  24. Way to go out and DO SOMETHING…. I applaud you! What is bullshit in my life is waiting while my friend is in the hospital hoping like hell to have her third baby and ACTUALLY leave the hospital with the baby (and not a baby funeral to attend)…. what she has is so rare that the leading specialist had to find 15 patients from 5 different countries!!! Tomorrow may be a true miracle, and by God I sure am praying!

  25. Aunt Becky, I feel your pain… my cousin had Spina Bifida back when there was no Internet or resources to help mothers band together… same when my daughter had Ewing’s Sarcoma, we did it, alone… I wish you nothing but good luck and fortune in setting up your website… will most certainly post links… Amelia is one lucky little girl to have you in her corner… {{{HUGS}}}

  26. I have long loathed that only the “sexy diseases and conditions get research money. It’s infuriating and just flat wrong. Someone’s baby, anyone’s baby, deserves our best and if we can’t do that for our children than who will we do it for?

  27. We have an excellently amazing story about our four year old son aiden surviving or should I say thriving after an encephalocele repair at five weeks old and now lives with hydrocephalus. He’s amazing, beautiful, smart and has the sweetest spirit. I will tell you more when I have more time. Feel free to write Or search Facebook using my other email

  28. If you need any papers that you can’t get access to, let me know. I’m happy to pull them for you (as long as my university has access). Or if you want me to run any pubmed searches, let me know. I’m always willing to help (especially as I’m procrastinating on writing my dissertation).

    1. Veggie-anything-supposed-to-be-meat (veggie burgers, tofurkey, etc) is bullshit. If you miss eating meat that much, eat a damn steak. As a bonus you won’t need a “vegan support group” because carnivores are awesome!

  29. I like turkey bacon, you can get it SO crunchy more than regular bacon could ever hope to be and still be edible. Yum. Never had tofu, so EFF OFF TOFU, YOU SUCK.

    I think faint pink lines, false negatives/positives, and waiting to tell people is bullshit. Also first morning pee. Annoying.

  30. Melanie makes me want to eat turkey bacon.

    And this blog? Awesome. Someday your beautiful baby girl is going to understand all of this and know what you’ve done, and she is going to be so fucking proud of you. Just like we are.

  31. Those numbers are staggering! 375 babies???

    Wow. Just wow.

    I think what you’re doing is amazing Bex. You are one of those people who will turn a tough time into something positive. At the risk of sounding like a total douche…I really admire you.

    And clowns? TOTAL BULLSHIT!

  32. This is how I felt after the fire. For all the resources on the internet, finding information about what to do after you lose your entire life in one insane moment was almost impossible. It’s people like us though that will ensure others don’t have to sit alone wondering what the hell they’re supposed to do next whether it’s a fire or their kids’ medical mysteries.

    And things that are bullshit- family that doesn’t understand why you aren’t just fine after dealing with trauma.

  33. My heart grew two sizes today. I’ll be scouting friends’nrelations for neural tube stuff. We have a lot of mania/depression/BPD/
    ADHD/Aspergers, but so far no neural tube defects that I know of, unless you count a tendency to eat shotguns.
    Bestest items: “29 shades of Furious George” and “Cuppity Cake…cut a bitch”
    I am appropriating these and will work them into conversation ASAP.

  34. Becky,

    My son had craniosynostosis, a more “common” condition than yours, tho not clearly understood nor covered frequently in medical research, much less EVER discussed by obgyns etc. (In other words, ” It’s a boy! Oh, and surprise! Your baby has a skull defect! Thanks for playing!) For years, there was literally NOTHING available for those wanting to understand it, much less, find others who share the same journey. When your kid got diagnosed, literally, you were left the mercy only of the doc who uttered the words since very little info was available.

    An organization called CAPPS Kids was eventually formed by parents with passion like yours. This has been an amazing resource for so many and we have all benefited from their colaberation and dedication.

    It is a very “grass roots” organization, literally “run by some ladies”…not a corporate office etc. I would suggest contacting those folks to perhaps have them help you get started in your noble journey.

    Good luck, and you pretty much rock.


  35. Love you, Aunt Becky! And, OH, do I loves me that Amelia! You and Amelia are the opposite of bullshit.

    Get out of her way, world! Aunt Becky’s on a mission. She. Will. Win!

  36. Doing good is Awesome. Becky, you are awesome. And so is Amelia.

    I love what you have done with BB2G. It’s an amazing place. I know you will do amazing things with your new site.

  37. For me, febrile seizures are bullshit. Whenever either of my children get a fever I go into full on panic mode waiting for them to seize. “Where’s the Motrin, where’s the Tylenol, damp wash cloth to the top of the head, run a tepid bath!” My daughter has been worse than my son, by far. In her short 2 years she has had more than 10 grand mal seizures – I say at least because that’s how many I’ve seen. I’ve found her in her crib during naps in pools of saliva and vomit, so I have to assume there have been quite a few more than I’ve acutally seen. The last 4 have been accompanied by vomit that scares the hell out of me because I think she’s going to choke. Now, logically I know (because I’ve been told repeatedly) that febrile seizures are pretty harmless. The limited information I am able to find insists that they rarely lead to actual epilepsy, generally don’t cause brain damage, and kids usually outgrow them by age 6. This, however, does not make me feel any better when my baby is having full on convulsions with her eyes rolled back into her head and vomiting at the same time while not responding to me. And being rushed from the doctor’s office to the hospital in an ambulance because my daughter has been seizing for over five minutes is not my idea of a good time. I think, to be honest, I probably have some PTSD from it all. After they seize and their fever starts to decrease, they improve at a shockingly fast rate. They go from half-comatose to skipping and asking for juice. THEY don’t seem to be traumatized but THEIR MOTHER IS A FREAKING WRECK.

    I know I shouldn’t complain, because my situation could be so much worse. They could have inherited my lupus, they could have cancer, they could be incurably ill, they could not exist in the first place. But watching my children seize is the most terrifying, gut-wrenching thing I’ve ever experienced in my life, and for that reason, Aunt Becky, I’m declaring feibrile seizures BULLSHIT.

    P.S. If anyone can put together an adequate resource site for neural tube defects, it’s you. I have full confidence that you and Amelia are going to continue to kick ass, and you have lots of pranksters who want to help you win this fight.

  38. i commented here a few weeks ago for the first time – my daughter was born in March 2009 in Los Angele with a previously undiagnosed occipital encephalocele. she also has acquired hydrocephalus (as opposed to congenital) brought on by the surgery she had at 15 hours old to remove the cele, so she has a VP shunt. she has had six neurosurgeries total, the last one on her first birthday. she is the baddest ass in the whole damn town, except for amelia, obviously.
    i took so much folic acid it would choke a horse, and for months before i even got pregnant. the geneticist at cedars sinai referred to it as ‘an isolated nonsyndromic event’, meaning we hit the shit lottery. i will help you in any way you need, just tell me what i can do. so glad to find your website, for your humor but also because of the 375 babies a year thing… obviously you know what i mean because it’s why you wrote this entry in the first place.

  39. Grief is bullshit. As is brain cancer and the wonderful fucking staph infection that took my wondeful Daddy’s life. Two and a half months from diagnosis to funeral home at the age of 63 is bullshit.

    And? Leukemia is bullshit. At least that is one of the ‘good’ things to get because of places like St. Jude that research it. But it doesn’t make seeing your 9 year old nephew not allowed to go to school because of germs any easier.

    2010 is bullshit.

    Somehow? I feel better. Thanks Aunt Becky (new reader and I think you sorta kinda kick ass)

  40. what is up with turkey bacon anyway? But anyway….you rock because of your passion…I wish I had something to contribute. But I’ll just wave my “yea becky” flag today…you go, girl!

  41. I found this blog while searching more stories on the positive side for women who have babies with Encephaloceles. My little Abigail was diagnosed with a posterior encephalocele only two weeks ago. Since then I have been vigorously searching for positive pictures of children who beat this diagnosis and don’t have some very horrible deformity, mental or physical handycap. When I saw your daughter’s picture I burst into tears praying that Abby will kick ass just as hard as your little girl did. And you are so very right. They is jack-$#!t nothing out there that is positive or helpful for women like us. Every day is a struggle. But I am holding stead-fast to hope and prayer that she will make it through this.

  42. Thanks for writing about this. My son also had an encephalocele and is doing great after his surgery. I was thinking along similar lines…there is so little positive info out there and when I was doing research all I seemed to come upon was scary stats and discouraging stories. Axel’s progress is here:

    I also tagged my post neural tube defect.

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