I wrote this on Band Back Together. You should read it.
And contribute, if you haven’t already, for our Spotlight on Birth Defects.
I wrote this on Band Back Together. You should read it.
And contribute, if you haven’t already, for our Spotlight on Birth Defects.
It seems a lifetime ago that my daughter was born, pissed-the-fuck-off at the world with an ominous lump on the back of her head. That day changed us both.
Once shattered and broken on that hospital floor, I’ve slowly pieced myself back together, removing the bad bits and replacing them with good. Stitched up and mostly whole now, I’m not the person who waddled into that room and popped out a very sick daughter. That’s okay.
I begged her doctors, all of them, for something, anything, to hold onto while I schlepped my ill daughter from neurosurgeon to neurosurgeon and I heard the one thing patients abhor most: “we don’t know what this means for her,” followed by the kick-in-the-teeth, “time will tell.”
So we’ve been watchfully waiting from the sidelines, celebrating the victories while fretting the small things: Does that foot-drag mean she’s brain-damaged? How brain-damaged? Is that a seizure or is she just fucking with me?
I don’t know when you exhale. I don’t know how to accept, “it really IS okay.” Because those words nag at the back of my brain, my own untouched brain, just below the surface: “time will tell.”
Sometimes, I get angry, because it’s such a bullshit thing to do, wait for time to do anything. It’s always been there, “time telling” underneath all the milestones and victories, as I wonder what next.
Today, we finally got our answer.
Time, that fucking bastard, got off his ass and came to our Early Intervention meeting and opened his whore mouth and said, “Amelia is at or above level for everything. We see no reason to continue services.”
And for the first time in a long time, I exhaled as my daughter, the Princess of the Bells, led me into the future.
I saw it in his eyes – a brief glimpse of deep sorrow – before he began dictating to his nurse the clamps and implants he’d need to fix the encephalocele atop my daughter’s head. It was the same deep sorrow I saw in the eyes of every person in the waiting room at the neurosurgeon’s office realized that Amelia Harks was, in fact, not me, but a tiny baby in a carseat, no bigger than my arm.
In that brief moment, the neurosurgeon became human, not some arrogant doctor, about to saw into my daughter’s tiny head.
Now that tiny baby, no bigger than my arm, is a toddler with an attitude so reminiscent of my own that it’s hard for me to remember that they are one and the same.
As she grows, the scar does too. What once looked relatively small now encompasses much of head. Her curls, always in a halo, cover it, so I don’t receive the same sorrowful looks I once did. For that, I am grateful. For if I did, if I had to explain those turbulent first years of her life, I don’t know if I could stop the sobs.
People, well-meaning people, tell me the scar is “barely noticeable” that they can “hardly see it,” and I always thank them on her behalf. Inwardly, however, I wonder if they know how that hurts.
It would not matter to me if the scar somehow became invisible – although she might appreciate it some day – because it’s always there for me. The scar haunts me.
Most days, I am able to work through it, reminding myself that she, my warrior daughter, is here and that she is perfect – scars and all.
There are other days, though, that the limitless well of deep sorrow I once saw reflected in the neurosurgeon’s eyes, threatens to swallow me whole. The tears, hot and fast, course down my face and I am powerless.
I scoop that toddler, once a baby no bigger than my arm, up into my arms and I weep. Confused, she touches my tears with her tiny finger and asks, “Mama sad?”
“Yes, Baby,” I choke out. “Mama’s sad.”
And the three of them – flesh of my flesh, blood of my blood – climb atop me to squeeze the Sads out. It’s only then, with the pressure of three squirmy bodies on my chest, all elbows and knees now, that I finally feel whole again.
And I wonder, as they scamper down, screaming and chasing each other about the house, my tears drying to a hard crust on my face, the well of sorrow closing for the moment, how I got to be so lucky.
I came to the End of The Internet on Friday. I was searching for a laptop bag, right? And it turns out that laptop bags are the fugliest thing on the planet. Well, at least, the ones I could find.
Hence, the End of The Internet.
But I get all kinds of pissed off when I can’t find something that should be so simple, so I spent most of the day flopping around indignantly, occasionally shaking my fists at The Internet Gods, who had, for the first time, failed me.
After my daughter came home from preschool, she climbed up onto my indignant lap and demanded to look at what I’d been looking at. Which happened to be the kate spade website.
She and I spent a good while perusing ridiculously expensive purses, which, apparently, she, like her mother, is enamored by.
Eventually, she slithered off my frustrated lap and stood on her head on the floor next to me. Seeing a perfect opportunity to teach her some gymnastics, I rolled her over, helping her perform her first somersault. Delighted, she stood up, clapped her hands, yelled, “YAY!” and then begged me to do it again. So I did. We probably did twenty somersaults together before it was time for bed.
And it was walking up the stairs that I noticed something. The scar on the back of her head was bright purple.
Now, she has a skull implant there, covered by a thin layer of imperfect scalp skin (thank YOU, neural tube defects), upon which no hair will ever grow. The scar is fairly visible, although it often looks like her part is just extra-long.
She’s also got a couple of birthmarks on her face, common for kids with midline skull abnormalities, all of which turn from mildly discolored to extremely red whenever she becomes Furious George (which, since she’s my kid, is fairly often).
But I’d never seen her skull turn that purplish shade before. Immediately, I thought of what a dumbass move it was to do somersaults with a kid who has a fucking skull implant.
I dragged her into the bathroom, where the light was a bit better, and took a closer look. It could be something…and it could be nothing. Either way, I was right back in that birthing room, delivering a sick baby again. Only this time, it really WAS my fault.
I called the doctor on call, snotting and crying all over the phone, as I kept her up well-past her bedtime, to assess her level of consciousness. When I realized that she seemed to be just fine, the purplishness had subsided, I decided to put her to bed.
Then I checked on her every forty-five minutes for the rest of the night.
The next morning, the on-call doctor finally called back. Apparently, the answering service sucks a fat one. “Keep an eye out,” she said, “for any other signs of head injury. Vomiting, loss of consciousness, swelling, bruising, irritability.”
Okay, this I could do.
The following evening, I put her in bed, where she promptly barfed everywhere.
Shit, I thought briefly, until I remembered that my own guts had been through hell that week. Okay, I told myself, it’s a flu-bug. She’ll probably be up half the night barfing her guts out.
But she wasn’t.
She got up late the following morning and ate a quick breakfast with her brother.
Then, on the way to the Computer Store, she yacked again. A full 14 hours after her initial vomiting episode. Which, to me, was a Very Bad Sign.
Off to the ER we went. After several very long hours, it seemed that was simply some very bad timing. A flu-bug was the most likely culprit for her illness.
She’s been grounded until her sixteenth birthday.
That is, after I buy her a pony and a Porsche.
I have a new column up every Thursday at CafeMom. It’s called (barely) Surviving Parenthood. It’s full of the awesome.
Speaking of Full of the Awesome, I was thinking about using THAT for a shirt design. Is that lame?
Also: TODAY is Tax Day, not April 15, which, hi, why didn’t someone tell me it was changing? That’s bullshit.
Anyway, the winner of my shirt giveaway:
They sat on the floor near the dollhouse I’d carefully chosen for Amelia’s second birthday, playing a matching game, putting together a puzzle and chatting. I sat nearby, as I always do, close enough for comfort, but not too close as to cause a distraction, my ears half-listening to their conversation.
Twenty minutes before, I’d watched her happily identify each of the planets on my iPad, squealing, giggling, clapping her hands and jumping at each image as it appeared.
I giggled whenever she got to “Uranus,” for obvious reasons.
And now, they were counting, “One, two, free, four, five, six, seven, eight, nine, TEN!” Ten was met with a burst of applause and a butt-shaking dance, because sometimes, that’s how counting makes you feel. I smiled to myself. I do the applause and butt-shake whenever I’m about to eat an Uncrustables. Or find a new flash mob video. Or vacuum.
Then, they were done.
“Amelia has made incredible progress. What do you think about going down to twice-monthly speech therapy?” Her teacher addressed me now, as Amelia busily got her “MIMI’S Froggie Boots” on.
Words failed to form. I simply nodded.
Whenever I stopped to think about the road we’ve traveled, the one rife with uncertainties, “what-if’s,” “could be’s,” and “maybe’s,” I am overwhelmed. A sweet-and-sour mixture of joy and sorrow; happiness and guilt.
And I am, once again, thankful for everything she has taught me, just as I’m thankful for everything my children have taught me.
From Ben, I learned to become truly responsible for another. He taught me to see beauty in the smallest of things, from a garbage can to Jupiter and it’s moons. I found out just how far I would go to do right for someone else, and I’ve learned to accept people as they are, not as I want them to be.
From Alex, I learned what unconditional love felt like. He was the first person I’d known who loved me simply because. Alex taught me that I was a good mother. From him too, I learned to appreciate how far I’d come. I’d gone from that scared, single mother, the load on her shoulders heavy, praying I’d do right by my firstborn, to the luxury of simply reveling in my new baby.
It’s from Amelia, though, the one with curls like a halo, that I’ve learned the most. Maybe it’s because she’s my clone, looks and personality alike, or maybe it’s because the road we’ve traveled in the past two years has always been rocky, uncertain and scary.
From Amelia, I’ve learned that it is possible to be shattered in a few short moments, by a couple of words, a terrible diagnosis. I also learned that this kind of fragmentation gives you a chance to start again; slowly picking up the pieces of your former life, discarding what you no longer need, adding what you do. All of those fragments of who you were and who you are will be pieced back together through time and love, and the cracks?
The cracks are where the light gets in.
Amelia has taught me to face my dragons head-on, even when the outcome was uncertain: sometimes you slay the dragon, sometimes the dragon slays you. But you can’t run forever.
She’s found Mimi’s Froggie Boots and appropriately cheered, “YAY! I DID IT!” when she managed to put them on “by myself.”
I grabbed my keys and we were out the front door, on the way to preschool. When we got to the edge of the stoop, where she considers the step down treacherous, she automatically raised her hand to mine and asked, “MIMI’S HAND?”
I held out my hand, marveling at how how someone so small, someone with hands like tiny birds, could have an impact so large.
Firmly holding my hand, Mimi lead me into the future.
When you were two, you were a tiny Muppet of a girl, all curls and whirls and bounce and fire.
When you were two, you danced when you were happy; clapping your hands and snorting and giggling.
When you were two, you could also kick the ass of anyone who needed it with your fists of fury. Your fury is legendary.
When you were two, Hello Kitty was your best friend. You called it “Hi Kitty.”
When you were two, your laughter sounded like the tinkling of a thousand bells.
When you were two, your mother tried to make you a heart cuppity-cake. It looked like testicles.
When you were two, your mother bought herself a present to celebrate your birth.
When you were two, your house was filled with balloons and laughter and love and light.
And for a moment, on the day that you were two, my heart took flight.
Happy Birthday, My Princess of the Bells, Amelia Grace.
One of the only things my mother – your grandmother – said to me that ever made any sense was this: “wow, you sure do have to learn everything the hard way, Rebecca.” I don’t think she was being unkind, considering I’d just dumped my cheating boyfriend, scrapped my lifelong dream of becoming a doctor, and pushed a squalling infant – your biggest brother – out of my vagina. I was twenty years old. That was before I then dropped my nursing career for an illustrious “career” as a blobber and popped out two more crotch parasites, so yeah, it’s safe to say that your grandmother was right on the money there.
And, I fear, it’s probably genetic.
Because the moment that doctor informed me that there was something wrong with your head, it reminded me of this: life is unexpected.
Had the pill not failed me, I never would have gotten knocked up with your biggest brother, which means I would be Dr. Aunt Becky (that’s Mommy to you) by now. In that one tiny moment, my life was forever altered.
That’s the way life works. It’s in those unexpected moments that we discover who we really are; who we are really supposed to be. Maybe it’s not what we planned or what we thought we’d be doing, but it’s beautiful and it’s ours. I don’t expect you to take my word for it. Go ahead, find out for yourself. You already have.
At a couple of days gestation, thanks to some wonky issues that no one understands entirely (folic acid deficiency plays a part), your neural tube didn’t properly fuse and that big skull of yours didn’t quite get put together the way a skull should. Then, your beautiful brain started to grow outside your skull cavity, necessitating some pretty heavy neurosurgery when you were a wee babe. That moment, at a couple of days gestation, forever altered everything.
Thanks to that one unexpected moment, a whole host of things happened. A cascade effect. The best of which is this: you now have a cadre of Auntie and Uncle Pranksters who will kick the ass of anyone who needs it for you (never, ever underestimate the power and love of The Pranksters). You’ve also helped put a face to your disorder, encephalocele, and you gave me the idea for Band Back Together.
Pretty good work for a two-year old.
I’m so proud of you, Amelia (or, as you like to call yourself “Nie-Nie”). Having a daughter was one of those lofty goals, like “having a discernible waistline” that I thought I could never achieve, and here you are. Even as I delivered you, I expected the doctor to tell me that you had a penis. I just couldn’t imagine I’d be so lucky as to have a daughter.
And yet here you are. My Miracle Mimi, the girl with the curls like a halo, she is here. Kicking ass, taking names, and probably going to murder me in my sleep over a pair of high heels.
I can hardly wait to see what you’ll do next. Unless it’s murder me. Which I really wish you wouldn’t do.
Happy Birthday, Sweet, Slightly Scary, Always Wonderfully Awesomely Ass-Kicking Baby Nie-Nie.
It’s you + me against the world, kiddo. So watch the fuck out, world.
This morning, once again, I woke up with my pillow soaked with tears, the sobs still fresh in my throat. I wiped my face off with my sleeve, as I sat up, trying to remember what dream I’d had, what had made me so bitterly sad that I’d wept in my sleep loudly enough to wake myself. Nothing. My memory banks came up with nothing.
I sighed as I changed my pillow case. Normally I dream about new and exciting ways to mock John C. Mayer, and although John C. Mayer could have been the reasons for my sobs (Hey, “Your Body is a Wonderland” is a terrible song), I don’t think it was.
This is the fifth time in as many days I’ve woken up with a wet pillow case. On the rare times I can fall asleep (a hearty fuck you goes out to insomnia), this is what I’m repaid with: night terrors.
Amelia’s appointment yesterday with the EI evaluators went as expected. She’s ahead in some areas, behind in others. It’s the medical equivalent of a push and it’s certainly not something that keeps me up at night, her inability to perform quadratic equations and properly discuss string theory aside.
I’ve managed to buy her a birthday present and pink cupcake mix for her birthday on Friday (still haven’t done anything for a big blowout bash), both of which should delight her. I’m thrilled that she’s going to be thrilled by this. Everyone should be so lucky as to have pink sparkles on their birthday cuppity-cakes.
And yet I’ve spent the last couple weeks talking through clenched teeth, the most minor of infractions setting me off, sending me into a blind panic. A dead weight has settled onto my chest there’s an omnipotent feeling of cosmic not-rightness. Everything feels wrong. Nothing is wrong, yet everything feels wrong.
My feelings make no sense to me.
I know what this is. It’s PTSD. Post-traumatic stress disorder. I hate to even write those words out because I see them and I know some assjacket is going to be all, “YER NOT A VET, YEW WHOR,” and then I’m going to feel worse because I’m already feeling guilty about feeling the way I do. I have the Girl That Lived and still I have PTSD? Certainly, I do not have a right to those feelings.
And yet I do. I’m as entitled to my feelings as the next assjacket.
Really, I liked it better when I pretended I had no feelings. I think sociopaths have that part down. Feelings are kinda bullshit. Unless we’re talking about my love of Bob Ross and Richard Simmons. Or any white guy with an Afro. White guys with Afros are most certainly NOT bullshit.
(you know, Dr. Sears?)
When I was in school, I took test-taking Very Seriously. This was extra-hilarious considering I spent most of my actual class time slouched in the back row playing Bejeweled and texting my friends things like, “OH MY FUCKING GOD, my classmates are MOUTH-breathers. Imma go all RAMBO on their asses.” Had The Twitter existed*, I’m confident that I’d have been on there all the time, filling it with my inelegant (rapier) wit.
But the moment A Test was on the horizon (which, in nursing school, was every other day), I was in my element. Synapses firing, notecards flashing, every A beaten by a higher A. I didn’t earn the semi-sarcastic nickname Super Becky Overachiever and draw comparisons to Hermione Granger by getting C’s. Also, if I’d gotten C’s, I’d have been kicked out of the program. Such is nursing school.
Now, just look at where all of those A+++++ have gotten me! I am a BLOBBER, er BLOGGER ON THE INTERNET. I CAN HAZ FREE PUBLISHING?!?
Early Intervention is coming today to reevaluate my daughter’s development. Turns out that tests? Not always so fun.
Here is my representation of how Amelia’s Evaluation will go:
Early Intervention: “So, does Amelia stack six blocks?”
Aunt Becky: “Oh yes. She stacks twenty**.”
Early Intervention: “Does Amelia feed herself with a spoon?”
Aunt Becky: “Amelia wins at spoon feeding! She’s a spoon-feeding CHAMPION!”
Early Intervention: “Does Amelia walk unassisted?”
Aunt Becky: “Amelia RUNS! Like the wiiinnnnnnddddd.”
Early Intervention: “Does Amelia pick up a Cheerio with her thumb and forefinger?”
Aunt Becky: “She can pick up a single grain of sand!”
Early Intervention: “Can Amelia do complex quadratic equations?”
Aunt Becky: “….”
Early Intervention (scribbles on papers triumphantly): “AH-HA! I KNEW IT!”
Aunt Becky: “….”
Early Intervention: “All other babies are doing complex quadratic equations at age two. You should really have been working with her by now. This is probably a result of bad parenting.”
Aunt Becky: “But. BUT! I don’t even KNOW what that IS!”
Early Intervention (writes down): “unfit mother.”
Hm. I wonder if I can play the part of Amelia today. Certainly Early Intervention won’t notice if it’s a grown woman pretending to be an almost-two year old.
P.S. I’ll let you know how it goes.
*It may have existed. I don’t know if it existed. I mocked Twitter a lot before I joined it. Which, uh, HUMBLE PIE ANYONE?
**Like I actually know this.
There are a few occasions when I take time from my very busy schedule of creating pictures of my fake dead cat, Mr. Sprinkles, doing wacky things to respond to emails. Because, really, is there anything better than this?
That Mr. Sprinkles! He’s a WILY guy!
But on very, VERY rare occasion, I get an email that makes me stop and go, “You know what? Maybe I should stop working on pictures of myself with my fake dead cat Mr. Sprinkles and do something better with my time,” (the feeling never does last)
A year ago today, I got one of those emails.
My now-friend Nikki sent me an email about her 20-week old fetus, who had just been diagnosed prenatally with an encephalocele. Somehow, she’d managed to look past the grisly stories out there about other children with encephaloceles (the fatality rate for encephaloceles is exceptionally high) and had found her way to my mediocre blog.
More specifically, she’d found Amelia’s Grace, the stories about my daughter who, too, had been born with an encephalocele.
Amelia was born with the kind of encephalocele associated with the least favorable outcomes. A posterior encephalocele filled with brain matter. I’d had a standard vaginal delivery. There was no NICU team waiting for her. In fact, no one was waiting for her but a nurse, the doctor and a tech.
In short, everything about the situation surrounding Amelia’s story was bad.
When I wrote Amelia’s Grace, the story of my daughter, I’d never really thought that someone else might find my drivel while searching for something to cling to. Some hope in an otherwise grim situation. Because the statistics, those cold hard numbers about encephaloceles; those are grim:
An encephalocele reduces the likelihood of a live birth to 21%.
Only half of those 21% survive.
75% of those survivors have varying degrees of mental retardation, the severity of defects higher for those who have the brain herniation on the back of the skull.
She, however, she is not grim. She laughs in the face of statistics. She will tell that encephalocele to shut it’s whore mouth.
Amelia will also give her voice to those who have none.
Nikki has been a good friend of mine for a year now and she’s helped me as much as I’ve helped her. Proof that sometimes people come into your life at exactly the right time. I owe her a debt that I don’t think she understands.
Now, I will simply direct you to Lily’s Story, which I have strong-armed Nikki into writing for Band Back Together.
Today is the day that it turned upside down for Nikki and my sweet girl, Lily Grace.
What a difference one year makes.