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.
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I have a new column up every Thursday at CafeMom. It’s called (barely) Surviving Parenthood. It’s full of the awesome.
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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:
(P.S: if you’re interested, they’re giving away a couple of my shirts on Band Back Together, too.)
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.
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