The first time I saw a brain, a real brain, suspended in some greenish liquid at the front of my gross anatomy lab, I stood there, staring at it for a good long while. I was long past being disgusted by the organs of the human body, and seeing the folds of the creamy white tissue struck me only with a sense of wonder. This was it, right there: all that you were, all that you thought, all that made you you was right there in that innocuous looking organ.
Really, it could have been a football for as glamorous as it looked.
But to know how it worked, studying the nuances of neurology, that is poetry. All of the mysteries that we still do not know about how the synapses fire to make one person want to maim and dismember and one person want to paint the Sistine Chapel, that is beauty. The smooth folds folding seamlessly into each other made up separate and distinct parts of the brain and instinctively I rattled them off in my head as I examined the brain in the jar: the cerebral cortex, responsible for how we are feeling, our emotions. Those that make someone laugh or weep, smile or scream, right there.
The parietal lobe, which is how we use all of our senses at once to make decisions, the back of the head responsible for sight, the very sense I was using to examine the brain I was so enthralled by. Without it, I wouldn’t be able to drive a car, see the deep brown of my son’s eyes, the bright red of the fall leaves outside of the classroom. One by one, I observed all of these structures on that brain, carefully preserved in formalin in a jar labeled ABBY NORMAL.
How could something that looked like a Nerf ball be so mystifying and so shockingly resplendent in it’s simplicity at the same time? Something that made each of us who we are should have looked unique, special, like a jewel and somehow, the more brains I saw, the more I realized that they all looked pretty much the same.
Maybe it’s what we do with those hunks of white matter that contains the beauty, because with the exception of the cerebellum (which is surprisingly beautiful), it’s a highly understated organ, especially when compared to something flashy like the kidneys.
When my daughter was born with part of her brain hanging jauntily out of the back of her head, the doctors pretty much shrugged their shoulders when we asked what that meant about her future. While she showed no signs of neurological damage, she could be profoundly normal or profoundly retarded, it simply wasn’t something that could be determined by a blood test or an MRI.
Up until she was a year old, Amelia was followed by Early Intervention, who came every couple of months, tested her, declared her normal and left. When she turned a year, I figured it was probably time to let them close the case on her for now and promise to make a call back if something changed. I know the drill with special needs kids well enough, and her medical diagnosis is an immediate qualifier for assistance.
It’s taken me until now to realize that there is actually something wrong with her beautiful brain.
Amelia has no words.
She has no words.
No glorious words, the very thing that I make my (pathetic) living from, she has none. I’ve always derived so much happiness in putting together combination of words to titillate, horrify, or move people, and she has not one word.
She’s had words before, they’ve slipped out of her mouth for a couple of days until it appears that she forgets them and goes back to shrieking and grunting to get her point across. In many ways, this terrifies me more than seeing my mute autistic son did, because it seems as though she has words, then loses them again.
It’s time to call the specialists back in and help my daughter find her words.
For good, this time.
I have a lot of delicious combinations to teach her.
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.
So I’ve frequently waxed on about how my daughter kicked neurosurgery in the balls because, well, anyone who undergoes brain surgery as a 3 week old and walks off with as wicked a scar as my Mimi did deserves to say that about themselves (or have their mother brag about it). Her scar is such that she’s going to have to come up with some kind of wicked story like, “bar fight” which is my go-to story when strangers ask.
Trust me, I get some looks.
Later, I said that Mimi kicked ass because she beat a diagnosis that often kills babies, or leaves them severely retarded. She’s entirely normal, if not a bit feisty, which, again, kicks ass.
What I didn’t count on was that my daughter would be a bruiser.
Sure, my mother often said that I was born “smoking a cigar and barking out orders” but I sort of thought that she meant that I was a short, fat, balding bookie kind of baby. I don’t know why I always pictured myself as The Penguin from Batman, but I did.
I didn’t think she meant that I was a BRUISER. Apparently, THAT was what she meant, not that I was a villain-baby, because to hear her talk about it, she STILL shudders when she describes me as a baby.
Maybe that was why my first word was “fuck.” I don’t know. But it does explain a whole lot about my personality now, doesn’t it? (just nod, it’s easier)
But that would be my daughter, who is, apparently, myself, who is, without a doubt, kicking all of our asses to get what she wants. It doesn’t really matter WHAT it is, she’ll fight you for it. Ear-bleeding shrieks followed by tiny fingered pinches, then followed by a gaze from those beautiful, luminous eyes, I mean, you IMAGINED that tantrum, didn’t you?
Nothing this sweet looking could be such a devil in disguise:
Underneath that sweet, cake-eating exterior, she’s plotting how to steal your wallet AND car-keys. Amelia, she’s a thug-a-lug.
Really, I thought that my testosterone-fueled middle son would have been the member of the Sausage Factory to contend with but it turns out that his sister is going to be the member of the family that will be all DROP AND GIVE ME FIFTY, SOLDIER. Mimi, who will probably drop the fluffy sounding name and go by the more refined sounding “A-Dog” will make an excellent drill sergeant where she will inflict her torture on her troops so much that they will have nightmares that she is standing over them, pinching them.
Of course, she will be standing over them, pinching them while they sleep, because she is THAT kind of bruiser.
I’m wicked proud of my ickle A-Dog, even though I’m sure eventually she’ll try to cut my hair into a regulation buzz-cut every time she sees me, which is fine, so long as I don’t go to sleep (Aunt Becky doesn’t sleep, she waits). Because I bet she WOULD do it while I sleep.
It’s a good thing, I think. The world needs more strong, fearless, smart, pinchy females to stomp the earth in their combat boots making everything their bitch. Amelia will be like Chuck Norris, only cuter.
Just don’t tell her I called her cute. She’ll punch me in the throat.
Fear me world, because I have come to CONQUER you.
Once I finish my juicey.
—————
At Toy With Me, I’m talking about my BRILLIANT plan: Peckers of the Caribbean.
Aunt Becky Shirts!
Subscribe Y’All:
