I realized yesterday, as I was responding to comments, (which is what makes me look like I get a zillion comments, FYI, every response I give adds a comment) that I probably didn’t explain properly to a good chunk of my readers who came into the story pretty late in the game.

I showed you a picture of the back of my daughter Amelia’s head after a post about my lame, clumsy ass and made a joke about a baby bar fight over my integrity. This would probably lead you to believe that her scar was the result of some sort of accident, as the post implies, because I don’t assume that most of you have read back into the depths of my pathetic archives.

Mimi was born with a previously undiagnosed birth defect called a neural tube defect.

What this means is that sometime during the first month of pregnancy, the spinal cord (called during this stage of life the neural tube) didn’t fuse together properly . It can happen anywhere up and down the spinal cord, causing a condition like spina bifidia, where the delicate spinal nerves poke out.

Or, an encephalocele, where the skull is malformed, and the brain develops outside of the skull.

MRI-Mimi

Like this MRI slide of my daughter’s brain, taken 2 days after she was born.

The full story here, here, here, here, here, here, here, and here.

(what, ME long winded?)

On February 26th, 2009, 2 days before our daughter celebrated her 1 month birthday, we checked into the hospital to have part of her brain removed and her skull repaired. The surgery was a complete success and while the scar takes up most of the back of her head, it’s part of who she is, just like the plate in her skull.

We’ll never know why it happened to us because that’s not given to us to know, but I do know this: somehow what I was given was a platform and a voice and I intend to use it as best as I can. Because I can’t believe this all was in vain. I just can’t.

So, this spring, I’m going to Walk For Mimi in the March of Dimes March For Babies, bug the ever-loving SHIT out of my family to donate (don’t worry, you guys are safe from me here), and beg YOU to help me with this:

By Neighborhood & World

This award comes with a cash prize that I want to donate to the March of Dimes in honor of my daughter because I want to have my pithy, silly blog mean something to someone and maybe, just maybe do some good.

I’ve kind of accepted that I’m getting my ass beaten badly for the other two (thanks to Dooce and Cake Wrecks), but I’ve made it into the top 10 for this one, but the email I’ve gotten says that the winner last year got triple the votes that I have and it ends December 4th.

So this is me, begging for your help. Ask your people to ask your people to help my people. Sign up isn’t janky or annoying. Unlike me, who is both. So, PLEASE? Halp me?

Comments

comments

144 thoughts on “Aunt Becky Has Some Esplainin’ To Do

  1. I’m so sorry to hear that you have had to endure this. I’m sorry that your Dr’s did not diagnose this while pregnant with her. It must have been heart wrenchingly shocking to find this out after her birth (not to imply that any time would have been a good time). I am so happy that her surgery was a success. I also love that you are taking this experience and using it as a platform to raise awareness and help others.

    1. I’ve done a lot of soul searching in the past couple of months and I hope that I can bring some awareness to other people and maybe, just maybe, help babies in the process. I figure I have the platform for a reason, so maybe I should use it (sparingly). You know? Thank you for your support and your sweet comment. You brought real tears to my eyes.

      1. You’re welcome. You are definitely going to help other women. Not only by raising awareness, but you are a source of comfort and support for other moms going through the same thing. I just started blogging. I have a daughter and son but also had a stillborn in between. I talk about her sometimes. I’ve found that writing about her has been very therapeutic for me. My Dr’s completely messed up, to put it lightly, and I’m still very angry. I know how sad I was, and can be at times and I didn’t even get to know my baby girl. I cannot imagine the pain that you must have felt and are feeling, by seeing your baby girl go through surgery at one month old. I’m sure that you worry for her all of the time. You are a very strong woman. Be proud of yourself for all that you are doing.

        1. Oh Anne Marie, I’m so sorry about your sweet baby girl. I had no idea. Have I added her to my wall of remembrance? Can I add her name there?

          Do you know some people in the baby loss community? Here’s a link to Glow in the Woods, which will steer you to other sites: http://glowinthewoods.squarespace.com/

          A couple of my friends write there. It’s a shared space and they do a wonderful job there.

          I’ll be sure to add your blog to my blogroll and be sure to check out Glow In The Woods. They’re wonderful and supportive. Again, I’m so sorry for your loss. No one should lose a child. NO ONE.

      1. Lol! Don’t feel like a schmuck. If you hadn’t mentioned, I would never have known to go vote! I’m assuming I can vote once every day?

        Thanks for the comment on my blog, and the compliment!

  2. Off to vote now as well. I knew the story behind the stitches and I just cannot imagine sending your tiny itty baby off to have surgery. Must have been rough.

  3. Thank you so much for sharing Amelia’s story – reading those posts made me tear-up and cry, thankful for never having had to go through something like that. Off to vote!

    1. I’m grateful she’s my last baby. Thank you for voting and I hope that this is what we were supposed to learn from this experience. I hope it all meant something. Because otherwise, I don’t know. I don’t know.

  4. I voted! So much easier than the others!

    Are you going to do the Bloggers Unite Blogathon on Nov. 17 for March of Dimes? (I have a button on my page if you have no clue what I’m talking about – too much work to go find and paste the link here)

  5. I will vote for sure. Please don’t take this wrong. But, I hate that one must “register” to vote. Ive got several sites now I will never ever use, but am registered for. A simple email only sort of thing would be better.

  6. I will vote for sure. Please don’t take this wrong. But, I hate that one must “register” to vote. Ive got several sites now I will never ever use, but am registered for. A simple email only sort of thing would be better.

    Voted
    (sorry for the mini rant

    1. Are you kidding me? DON’T APOLOGIZE. I think it’s bullshit that you have to register. Total bullshit. Pisses me off to no end. I don’t want a registration for that site either.

      *sighs*

      Thank you, though.

  7. Rocked the vote!

    March of dimes is great! I remember going around the neighborhood with my Mom collecting dimes back in the late 60’s.

    1. Did you really go around collecting dimes? That’s really cool. It’s a great organization and I am proud to be a supporter. I always have been (well before Mimi was born so sick) but now I want to be a vocal supporter.

      1. Yep, they sent you a card with holes cut out for dimes and we went around and collected then sent in the card. pretty slick for the OLD DAYS!

        It is a great organization and they will be happy to have you on their team!

  8. Yep, I’ve read a few of those posts and knew what the scar was from. It sucks to have to see your little bundle of joy in all those tubs and stuff after surgery doesn’t it.

    Now when I see a baby the same age as Joey was when he went through this surgery, that surgery, this procedure, and that procedure, I think of how big and strong he seemed at the time…….for having gone through so much. And I look at that baby who is healthy and think, was he really that little when he had surgery for the first time, second time…….7th time???

    Sad thing, he probably was even smaller because he was in like the 3rd percent on the height and weight charts.

    I bet Mimi seemed bigger at the time too. Bigger for having gone through so much stuff. Stronger for handling it so well and braver than any other kid her age.

  9. I absolutely hate signing up to websites to vote for things but I read your blog everyday and have even read the story of your sweet baby girl so I just couldn’t resist! Don’t feel bad about begging…you’re doing a good thing!

  10. Oh, I am SO voting for you. Sure, Dooce makes me hate and Cake Wrecks makes me laugh, but only YOU make me hate like a school girl with a crush, and only you make me laugh so hard I pee my pants.

    Seriously, the Amelia thing? I don’t know how you survived that. You’re my hero.

  11. I did know the back story of our little cinnamon girl. I just always think of her as being bit by the Awesome! Because. Obviously.
    There is some special purpose for all of this.
    (has to be right?!?) *sigh*

    …off to vote…..

  12. I got your back girl!

    On another note, if you didn’t DM me on Twitter yesterday then you may have been confused by the DM you got back from me. With all the fake shit and viruses going around now, I wondered if that was really you. LOL

  13. I joined, and voted, and then tried to add you as a friend……are you even ON THERE ? I set up my profile and EVERYTHING, answered questions, offered my firstborn (because this week, man, you can HAVE HIM) and then I go to “add friends” and there is ONE (1) “Aunt Becky OH” (bwahahahaha says Daffodil Campbell HI, and isn’t that eerily accurate. You’re all “Oh !” and I’m, well, high on Midrin at the moment but I digress.)
    Anyway, if you’re on there, hook a girl up. I’m friendless and it’s fucking embarrassing.

  14. Dude, you had my vote before I knew what your intentions were with the winnings. Now I’m all about making up ghost accounts … er, … evangelizing to everybody I know.
    Also, if the scar is a source of embarrassment to her later in life, she can always trick or treat as a Hasidic Jew. Just curl her hair and get her a yamaca. Here to help in any way I can.

  15. Of course you got my vote Aunt Becky! I’d be all about telling people the baby bar room brawl story 🙂 Poor Amelia….Good Luck with the March of Dimes March xx

  16. Thank you for everything. I’m going to check out the link you gave me to Glow in The Woods right now. I didn’t know about it. Also, I would love it if you would add Isabel to your wall of rememberance. Thanks so much.

    1. I will put Isabel up on my wall and she’ll be included every time I do a post where we remember all of our lost babies. I hope that you find some peace and some comfort in the baby loss community. I’ve met some wonderful people there myself.

  17. Girl, I would vote for you for PTA president if you’d run. I know you don’t want to bug your readers to sponsor you for the walk but I would like to. Or I could make a donation in her name?

    1. Thank you so very much. You are such a love. When I get my team together, I’ll put my box (heh) up in the side bar and if you want (I WILL NOT BEG OR SOLICIT DONATIONS BECAUSE I FEEL WEIRD ABOUT THAT) you can sponsor in Mimi’s name. But you don’t have to AT ALL. Seriously. It’s okay.

  18. Hiya Aunt Becky!
    Ive been lurking about in your archives since I came across you from Cake Wrecks and just got all cought up to date, and wanted to let you know I totally heart you!
    (now that is a run on sentence)
    You have made me laugh my ass off more times than I can count, as well as get absolutley no work done. I love that we have the same sense of humor and call your kids assholes. For the record I think a bar fight is the natural explanation for any type of scar!!

    1. Well, now I am blushing heavily and am pleased to have met you! Thank you to Cake Wrecks for introducing us! (I am obviously ALL ABOUT run on sentences)

      And what baby HASN’T been in a bar fight!?!

  19. Sooo is this a good time to tell you that when I found your blog (from cakewrecks), I sat here, sniveling, snotting and the like, reading every-freakin-one of your posts? Dying a little inside as I imagined what that was like? I don’t remember if it was right before or right after my son was born. Either way…waaayyyy too hormonal to be reading about encephalocele.

    1. Oh trust me, I wept the entire time I wrote those posts. And with one of them? I DELETED IT BY ACCIDENT MIDWAY THROUGH.

      Can I just tell you how much I wanted to murder someone? Oh, it was bad.

      1. OMI! So sorry about dark bleakness. Will send you some sunshine… without the vog. We’re in the doldrums, so the emissions from the volcano on Big Island drift over here and we’re without our clear breezy airs. Taking my “vog buster” remedy. Homeopathic suspended in brandy. LOL See the sun in your heart… coz it always is there. Smiles ~

  20. Dear Aunt Becky,

    You’re my hero. I mean it. I’ve had it so easy with both my kids, and while I thank God for it every single day, I also know that anything can happen. I hope that if it ever does, I’ll be as strong as you.

    Oh, and I totally voted. 🙂

  21. I voted for you ~ you are my favorite blog by the way! I also put a link on my facebook page, so hopefully I can get you some more votes : )

    1. Susie, thank you. I really hope that we can get some awareness for the March of Dimes if nothing else. I feel like I need to do something with the chance I’ve been given (if that makes ANY sense at all) to teach.

      I don’t mean I’m going to turn into a blog about other stuff, just that I want to do some good, as well.

  22. Hey Becky-

    I’m a grandma to two fantastic kids. I’m also a software engineer, Air Force vet, and marathon runner.

    I never thought I’d read a “Mommy” blog. In fact, I’d never heard of Mommy blogs until I followed a link from Consumerist.com (which is a daily read) to lovelylisting.com, which had a link for voting in a contest. When I clicked on that (late for the party, after the completion of voting) I saw a bunch of other sites that were nominated.

    Since I was at work and the servers were hung, I idly clicked through the winners and the runners’ up. Most I left rather quickly. Then I found your site, and I’ve been here every day since.

    I really love your writing.

    So – I voted for you in the divine caroline Love This Site Award. Now that I’ve signed up at that site, I guess I’ll go over there and browse.

    Good luck.

    1. Alice, your comment was so very sweet, thank you so very much. You’re the kind of person I hope to be, because it sounds like you’ve had a fantastically interesting life (The Daver is a software engineer too, btw) and that you’re happy.

      I’m so glad to have met you and I’m so glad that you’ve stuck around. I only hope that I don’t disappoint.

      Thank you so much for your support. xoxo

  23. Since I have 4 kids with neural tube defects, this is an issue extremely close to my heart.

    OF COURSE I’m gonna vote for you (as often as they’ll let me) and if I lived near you, I’d walk for Mimi and my own kids, as well. You should tell how to donate in support of March of Dimes, too… I am sure I can’t be the only person who’d want to help out!

    1. I wish you were closer so we could walk together! I’m putting together a team! Well, it’ll probably be The Daver and Ben and I, but, you know.

      (why did that sound all like “I’m getting the BAND back together!”)

  24. i just voted for you on divinecaroline. also, while i was at it, i voted on blogger’s choice for you. *my* vote for Hottest Mommy Blogger (shake your moneymaker, baby) tied you up with dooce. unfortunately, you are both getting your asses reamed by some other blogs out there. which i have never heard of. and never will. why? because i don’t cheat on my aunt becky. i’m faithful like that.

    1. Holy CRAP, Paul, you’re all putting me to shame and stuff. I have no idea, but probably not that long. A lot of the people that walk, uh, can’t, uh, walk easily. So, I dunno. You’re not local, are you? ‘CAUSE YOU COULD WALK WITH US.

  25. i have a good friend whose oldest daughter had spina bifidia. she is 10 and has had 3 surgeries on her back but is a beautiful, brilliant, sweet kid.
    anyways…off to vote for you!

  26. Thanks for clearing that up. As a new fan to your site I was rather puzzled and read the post twice to try and deduce what was going on. I’ve voted for you – hope you win X

    1. I should have been more clear about that because, well, yeah, in rereading it, I realized that it was really in-congruent with the rest of the post. I’m totally sorry. I need to put together a link on the sidebar to explain better! Thank you for your vote!

  27. I (think) I voted for you! I went through the registration process (gah) and then went back to the site to vote and the “VOTE” button was greyed-out to “VOTED”. SO I have no idea what the hell I did, but my intentions were good (geez, that could be my motto…).

    My comments on the previous post about scars were meant to give an example of how a girl can take them in stride as she grows up, and into them – I was a bit worried it would be taken the wrong way. And thanks for sharing Mimi’s story, I can only imagine how heartwrenching it must have been to live through it, then write it down. You’re wrecking your street cred with all this heartstring-pulling 🙂

    1. No, what you said helped because I honestly don’t know how she’s going to feel about her scars as she gets older. They are hers, not mine, and while they make MY stomach sink because to me, they represent an emotional response to a horrible situation, to her, they’re part of her.

      But to her, they will be just what she deals with. Something she’ll hate as a teen, because it will be hard to cover up unless she pulls her hair back. But part of who she is. And I’ll take that over her here ANY DAY.

  28. I’ve seen my second son receive stitches on his face for a dog bite AND a few years later I watched him have a tooth pulled out.

    CLEARLY, neither of those incidents are even CLOSE to what you experienced with your daughter.

    What I’m saying is, those were very upsetting events for me and my husband…I can’t even IMAGINE how upsetting, gut-wrenching, devastating, and scary the surgery must have been for you and Daver.

    1. That was a dark month and it’s been a dark year for me. Cheerful, optimistic Dave has been better than me, who has imagined the worst scenerios. For now, I am just grateful that it all did go as planned and really? She’s perfect. Dave and his rose-tinted glasses were right.

  29. Wow. You’re even more awesome to me than you were yesterday! Amazing. You are truly amazing. And The Daver too.
    As far as the scars. I didn’t have brain surgery as a wee kid, but I did split my head open. So I have a long ass scar down the back of my head. My mom told me that when I was little, if she parted my hair just off center (for pig tails) it was perfectly visible. I think it’s kinda cool, but I’m not shaving my noggin or anything. Over the years it has faded a lot too.
    I think it’s a badge of courage for Mimi. She survived something that not many survive, she kicked ass and took names. She’s a superhero!

    1. My brother thinks that Mimi should shave her head and get a gigantic scorpion tattoo with the stinger as the scar so she looks super hard core. I’m thinking that may be…a little much for a toddler.

  30. I’ve got a six-inch scar on my left arm where there was once a bone tumor the size of my fist. My sister, Anne, has two enormous scars on either side of her waist where they removed most of her infected kidneys, after she turned blue in her crib when she was six weeks old. They’re not the prettiest to look at, but they are reminders that medicine can bring about miracles, as it has for your Mimi. It’s wonderful to give support in her name for those who have yet to get their miracle, and in memory of those who never did. You have my vote.

  31. OF COURSE I voted for you. Unfortunately, it only lets me vote once, otherwise I would vote you into infinity and make Dooce cry in her thousand dollar cornflakes. But I will post it on FB and Tweet it too. You know, for my seven followers.

    I would never vote for anyone but you, Becks.

  32. I voted for you! I really appreciate your entire approach to this issue. Not “poor me, why must everything happen to ME?” and not “everything happens for a reason, so watch my beatific attitude and weep at your inadequacy.” I will happily donate in sweet Amelia’s name when the time comes.

  33. My son was born with aplasia cutis congenita, and the nurses and pediatrician thought that I was crazy when I pointed it out, because the scars were surrounded by hair collars. After a while, though, they agreed that he did, indeed, have scars on the back of his head. There the consensus ended. No one could (or can, to this day -he’s almost 8 months old) tell me what the long term impact of the defect would be, or what I ought to do for him. While not nearly as serious as what your daughter has, I can, to some extent sympathize with the worry, the panic, the fear, and the uncertainty. Thank you for sharing your story – it made me feel much less alone. Birth defects suck, MOD rocks.

  34. I’m a particle physicist (which is why I used to live in Naperville), so if Mimi wants to become one, I’ll help. Also, if you need someone to convince her not to become a particle physicist, I’ll help. Whatever you need, just let me know 🙂

    Just now I read her story for the first time, and it made me cry. I’m so happy for you that she turned out fine, after all you’ve been through.

    I had already voted for you a couple of weeks ago. Seems like your competition has no chance 😀

    1. It’s a Small World After All! I bet that you do know me! Or, at least you know Ben’s grandparents! They work at Fe.rmi lab as well and they’re freaking awesome. The Ka.sper’s? Oh yeah, loves them. I would move in with them if I could, but sadly, I only see them occasionally (I am not married to Ben’s father).

      And thank you for voting for me. I wish you still were local so we could catch some coffee or some vodka or some vodka/coffee.

      Mimi is totally going to be a particle physicist. I just know it.

      1. I didn’t know them, but when asking my husband if he knew any Ka.sper at Fe.rmilab, he was like “Which one? There are 2 of them: Pe.ter and Pe.nny”. And he knew about the birds and things – what they were both working on, etc. So yeah, it’s a small world! Looking at their pictures, they both look totally familiar, I must say. Does that mean that Ben will be a particle physicist too?

        Oh, and I know why you’re not married to the guy. Good for you!

        I wish I was still living there, just to have a coffee with you sometimes (I drink about as much vodka as you do). Or go for that walk for Mimi. (Sigh.) Reading your blog makes me Chicago-home-sick.

        1. I would (and probably will) visit, but for now I have a 10 weeks old semi-permanently attached to my breasts, which makes the trip from Germany to Chicago a little more difficult. And much less likely that my boss will pay for it.

          I’ll be your pen pal for a while, if you’ll let me 😀

  35. I never register for things like this just to vote for other things, but I registered, and I voted, because you and Mimi and the March of Dimes are all awesome and totally deserve to win! 🙂

  36. your awesome becks. you make me laugh so hard. and have the courage to say the things some of us other mothers would only say to our closest friends. thank you for always being real and honest. i think what you are doing is amazing. you and your family are so brave and couragous. i am very blessed to have 3 healthy children. we had some complications with our youngest. it was a very hard pregnancy. she was a preemie and had to get an ekg at 6 days old. it was hartwrenching but she is perfect. i have no clue where you found the strength to watch your one month old go into surgery. i wish i were as strong as you. i am happy to hear that she is doing well and i hope things are looking better for you this year. you deserve this more than anyone else girl. stay strong (amelia must get it from her mom<3)

    1. Thank you so much for your sweet comment, my friend. You made me tear up (don’t tell anyone, okay?) with your kind words. Things are already getting better.

      Thank you for everything.

      xoxo.

      Give all your kids a kiss from their Internet Auntie Becky.

  37. I have never in my life registered to vote for something because I find the whole registering thing really terrible, like nearly as bad as when the lady at the presidential election eyed me up and down as she examined my driver’s license (YES, I know I’m 20 pounds heavier than it says, shuddup), but you, you aunt becky, have convinced me to register for the first time and vote for a damn good cause.

    Less than three (<3).

  38. Same as Katy. I really hate registering for voting things.
    But that’s a good cause and so I will.
    And did.

    I also stuck it on my Facebook wall, with a link of where to vote, why to vote and a plea to THINK OF THE CHILDREN.

    Hopefully that should get you some votes lol 🙂

    1. Making you register to vote makes me really angry, and I’m sorry for it, because that’s crappy. It wasn’t annoying to register, but still, it was annoying that you HAD to register.

      But it was a good cause and honestly, I thank you very much. Because YOU? THOUGHT OF THOSE TEENY CHILDREN.

      Thank you.

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