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.

106 thoughts on “There’s A Blaze of Light In Every Word

  1. Praying for Lily’s surgeon & medical team, as well as for Lily & her parents & everyone who loves her. Can’t wait to read the “awesome news” update.

    She’s a beautiful baby. Congratulations, Aunt Becky!

  2. Aww, Becky, you are as sweet as could be, a bright spot on a cloudy day. Nothing comes easy sometimes, but when it’s your baby it’s just f’d up! Of couse, in the end it’s all worth it. What’s the only thing better than one little girl? Two! I’m so glad your chick is just fine and it sounds like this one will be too. Sending happy thoughts for both. XO

  3. That’s awesome. All of it. Thanks.

    And wow! She’s a beaut! Congratulations Nikki and Aunt Becky and all. I’m sending my best thoughts to Lily Grace this week. And I’ll tell my girls and my little boy, who take these things (the power of all) very seriously and they’ll be sending their best light too.

  4. Becky, this was a lovely post. Really. You are so right; none of us are alone with the power of this community of bloggers! πŸ™‚

    Nikki, congratulations on the birth of your beautiful little girl! I just wanted to say that I know first hand how scary the world of pediatric brain surgery is. I send you strength and my prayers today.

    Welcome to the world, little Lily. May you follow in Amelia’s footsteps and continue to kick some serious brain surgery butt today!

  5. Welcome to the world Miss Lilly! I’m positive that you’ll kick ass in surgery just like Miss Mimi did. I mean, with an Aunt Becky and a band of Merry Pranksters behind you THIS early in life, well, I’d say you’re set!

    Praying for everyone involved today.


  6. Oh she is BEAUTIFUL. And that wonderful post made me tear up. Sending love and my best healing vibes over to Lily, from Australia. XO

    (Australia isn’t my name, it’s where I live. Just so you know.)

    (Becky I am shitting my lederhosen in anticipation of meeting you at BlogHer.)

  7. It is far, FAR too early in the morning for you to have already made me cry! I will be sending love and light to Lily and her family today and waiting for an update!

  8. Thanks for making me cry, you jerk.

    I will say prayer upon prayer for little Lily today. My daughter, Madison, doesn’t have any sort of life threatening condition but she does have hip dysplasia and as a result she’s spent most of her life in a harness or cast. I never really thought people were reading either until I started to get emails that people’s doctors had found my site and suggested it and found out that people weren’t so nervous about the body cast after reading my blog.

    Those connections make every asshole comment worth it. πŸ™‚ keep on keepin’ on!

  9. Sending positive thoughts to her!

    That last line you said about blogging – that pretty much sums it up for me. And I just started out wanting to write. I never thought I’d make friends. It’s just awesome!

  10. Becky – I love you, thank you for this post. Your words and the well-wishes from The Pranksters is giving me strength as we sit in rush hour traffic on the way to the hospital. I can’t believe the day of her surgery has come so soon. Thank you all for sending love, light and prayers Lily’s way. She is one lucky little Diva to have all these people pulling for her. I keep finding each day that she really brings the best out of everyone. She is already an amazing little girl, and t is because of her that I am now able to call Aunt Becky my friend. It was truly more than a coincidence that I found Becky. And look (well, Internet, you can’t actually look, but you get my drift), traffic has let up. Almost there. Keep praying.

    1. Oh, Nikki, congratulations on the birth of your beautiful Lily Grace!

      I am holding you both in my heart and I just know that she will kick the hell out of brain surgery just like Mimi did.

      Remember that we are all here for you.

  11. I love that your writing gave another mom hope! That is wonderful.

    The best side of the internet is that we’re not isolated in our own little communities anymore. No matter how rare the condition or issue, we can reach out and find others going through it too. You’re right–we’re not alone!

    Now…will you come over and hold my 1 month old infant for me so I can get a shower? How about just 5 minutes so I can take a crap? πŸ™‚

  12. what a beautiful baby! i am hoping and praying just for her today!
    and how lucky nikki was to find you, just when she needed you. xoxo

  13. How absolutely wonderful. I’m over here nodding my spambot head at each word you type. Lily is going to stomp brain surgery like Rambo, I can feel it.
    So much love and light to both you moms and their obviously beautiful baby girls.

  14. Lots of prayers…for Lily Grace, Mommy and Daddy, surgical team and everyone else involved with this little one.

    It is always wonderful to get credit that this little thing we do here on the internet can actually help someone else in need.

  15. I come here for the vulgarity and mushroom prints, yet you keep making me cry. *sniffle*

    What a beautiful little baby!! Thinking of ass-kicking baby Lily!

  16. Many prayers for Lily and her family today!

    My son was born at 28 wks gestation and it was very touch and go for a while. The last time I cried on his birthday was 2 yrs ago when he turned 10.

  17. Praying for the beautiful Lily Grace, and for her family…

    Fearing the day when she and Mimi get together to take over the world…

  18. I’m visualizing Lily Grace as a beaming toddler, a goofy kindergartener, an energetic 10-year-old and a beautiful teenager.

  19. I don’t do praying, but all the love and light in the universe to Lily Grace, her mommy, and those awesome neurosurgeons today. Named after Mimi, you can’t go wrong, little one. πŸ™‚
    Aunt Becky, I can’t for the life of me remember what it was I was searching for in Google when I happened on your blog, but I thank you for helping me feel not alone. I had nothing wrong with my baby, but being home and not having any grown-up people to talk to(and a husband also home for .00004 milliseconds/week), I felt connected with all your profanity and insanely funny stories and adorable kids to nom all over. Thanks for always being there. I am a real person and I DO read all your words, and they do matter. I barely knew what blogs were before I started reading yours. Now I have my own, which I WILL start writing in for real once school is over and I am back at home with my babies for good. A week and a half!!! So right, anyway, thank you Aunt Becky. And yeah, ya made me tear up in class – AGAIN!

  20. Sending love and light to ms. Lily Grace, her parents and the doctors. What a beautiful face! Look out when she and Mimi get together….there will be no stopping them!
    I don’t have small kids anymore……….and i don’t write a blog……i’m not sure how i found your blog, but i LOVE it. You make me cry and laugh all within the same 5 minutes. You may be reaching people thru the internet, but it is your humanity that touches us…..as scifi dad said…”changing the world one vulgarity at a time”

  21. I love reading about your success story and how much of a strong person you really are. I don’t get a chance to comment much because I don’t have any related experiences but I always send my love and support to you.

  22. After reading about Twitter and blogger scammers today, I needed some positive words about interweb buds from my Aunt Becky, who is very real (um, you are real, right?).

    Kick some ass today, Lily Grace! πŸ™‚

  23. Also if anyone could spare some extra prayers my friend has lost two babies (one still birth and one premature labor)……and is 18 weeks preggo with her third….. trying to send lots of good thoughts and prayers her way too!

  24. You are so full of the awesome, Aunt Becky! Sending love and light to the gorgeous Lily Grace and her family.

    She totally looks like you. πŸ˜‰

  25. Yay Lily Grace! Kick some brain surgery ass!
    Aunt Becky…will you believe that I’m real if I bing you in the head with a beach ball?
    The connection you keep with your readers astounds me and impresses me…it’s just a testament to your awesomeness.

  26. Last time I checked, I was a ACTUAL people. However, change in inevitable, so I should probably check again.

    Prayers, good thoughts going out to Lily Grace and family. Nothing worse than your kids being sick.

    Give ’em hell, Lily!

  27. This is why I read you. You make me laugh and cry and make me wonder what you’ll write next. Today you’ve brought tears to my eyes and in return I send out Love to Lily Grace and her family.

  28. You know it’s very weird for me, this is one of my favorite blogs, and I feel I am starting to know you, but you don’t have a clue who I am . I kind of feel like a lurker that identifies with you. I guess I will just have to get over it. I will definitley keep Lily Grace in my thoughts and prayers.

  29. Sending prayers and love to Nikki and the beautiful Lili Grace. I just joined the Merry Pranksters a few months ago and I am so proud to be part of it.

    β€œEvery 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.”

    That is what drew us together. You guys are magnificent, bitches.

  30. Lily Grace has my prayers. Lots and lots of prayers for her, her surgeons, her nurses, her nurses aids. Prayers for her parents, her siblings (if any), her aunts and uncles, grandmas and grampas…..lots and lots of prayers for everyone involved in this little angel’s life.

  31. While I don’t have a blog of my own, this is what I love about blogs… the communities that form and the people showing that they care. Full of the Awesome.

    Also, praying for Lily Grace and her family… knowing how difficult today will be. And praying that Lily kicks brain surgery in the ass!

  32. sending lily grace some major warrior vibes. and thanking you for being in the world and showing all of us bloggers and interwebz people love and support. you’ve been a tremendous inspiration. mwuah!

  33. Welcome Lily Grace! Much love, many prayers, and well wishes are being beamed to the universe for you, your family, and your medical team. You and Mimi are destined to run the world, I know it.

  34. You do indeed touch the lives of many people with your words, and reading those words means a lot to me. Rest assured that baby Lily is in my prayers and in the prayers of many others I’m sure. xoxoxoxoxoxo

  35. We love you Aunt Becky!!! And, everytime you post about the difficulties you hAd with Ben, I feel hope for my 13 year old because sometimes I just feel lost. So thank you! πŸ™‚

  36. Becky,

    I can’t read the comments, I just can’t today. I went to a meeting for my son thinking that we were just determining if he qualifies for special education services & was blindsided with an IEP meeting. I don’t know how badly I’ve let the little dude down (because he doesn’t really communicate), but I agreed to put him in the special education kindergarten instead of fighting for having him in the neighborhood school (because he doesn’t really communicate).

    I’m so sad. I went to Twitter looking for funny & found that you had posted. Love to you & Nikki & Amelia & Lily. God help us all.

  37. Aunt Becky, you do not disappoint! I’m happy to have stumbled across this blog. And happy to know that there are real people out there. (Although, I have to be honest it’s pretty scary too. Because, HELLO, real people might be judging, I mean reading, my blog. What?)

  38. Oh Becky! That was beautiful! You’re like the inclusionary blogger extraordinaire. You do compassion and friendship and It’s a Small World so damn well. Sniff sniff. Sending prayers to Lily Grace for sure.

  39. I love you Becks, and your Pranksters, and your new niece Lily, who will be fabulous, based on all the good will we are sending her way. Way to go Lily and Nikki!

  40. What a beautiful girl, Lily Grace! Sending all our love to Nikki and family.

    Thank you for this ray of light in the scary world of neural tube defects. You know we (and I’m probably talking about ME but not wanting to) can use them.

  41. AB – There is a song by an amazing English group called “The Editors” titled “The Weight of the World” that has the following lyrics:
    “Every little piece of your life Will mean something to someone”

    I’ve found that what we may deem as small or insignificant events can really touch other peoples lives in amazing ways. Your blog about your daughter helped others and they in turn were able to reach out back to you when you needed it.
    Karma rocks!

  42. This post right here is why we’re tripping all over each other fighting Davers over you.

    Bless you for helping someone hanging on to sanity by their fingernails.

    You saved her life.

  43. Becky , very thoughtful, poignant but very funny writing . I would love to blog but feel intimidated by skillful , brilliants writers like yourself . I wish nothing but love and happiness for you and your family . I’ll keep reading……

  44. Wow. That is really awesome that she found you through a search. It makes everything worthwhile.

    I have received 2 emails from total strangers/nonbloggers who “found” me and I made them laugh. One was from a mom with a boy who has cancer and another was from a woman who was despressed that day.

    What they said to me will always keep me writing even if I never ever get another comment, ever.

  45. It’s funny, I feel like that so much. Alone, writing in clothes I can’t leave the house in, well actually I do but shouldn’t. Okay that really wasn’t the point…

    The point was alone. Writing is sort of an odd lonely thing and you’re right – it’s these things that make you feel not alone.

    And remember why.

    And all. Well, shit I’m getting all weepy now.


  46. I will be praying for Lily Grace, just as I say a special prayer for Amelia Grace every night, and you, Aunt Becky. I know you know I am a real reader because I emailed you over a year ago when I found your blog and you replied to me personally! YAY πŸ™‚ My under 3 lb. preemie baby (who was born with a defect that terrified me) is now 10 and doing just fine! I bonded with you as soon as I read about Amelia. I read your blog every day, and your posts almost always bring me to tears (happy or sad.) Your eloquent messages are usually the highlight of my day; whether they are about Ben and his autism, Alex and the cupcake shirt (he is very like my son), or Amelia kicking the ass of her latest milestone. In short (obviously not), you are awesome, and I have introduced your blog to other moms who have babies with “issues” (you should be required reading – the freaking NICUs in every hospital should have mommywantsvodka.com listed in the discharge instructions.) I wish you had been blogging and I had found you years ago when I was so alone and afraid, wondering if I we would make it through any of the 3 major surgeries before my baby was 2. But at least I can be reassuring to others, offer prayers, and praise the doctors and nurses who do such remarkable, miraculous work. Please keep up the good work, my friend in my computer. <3

  47. Congratulations to both Lily and Amelia. Way to prove the numbers wrong!

    And thanks for the reminder that though it usually feels like the Internet is this giant void that sucks up my thoughts and eats them up, there really are people out there who listen and think and respond and care. It helps to remember that.

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