The Aftermath

Posted on August 27th, 2009 by Your Aunt Becky

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My daughter is teething, I think, but I’m not quite sure. I mean, I THINK she is, but I would have sworn on a stack of Bibles that Alex was, too. Turns out that, no, Alex was merely unpleasant, and popped his teeth after his first birthday without pomp or circumstance. He went from zero to Jaws-like in the matter of a couple of days.

Ben, like Alex, was so full of The Screaming that it was impossible to ascertain if he was teething, or just displeased by being born (the NERVE!). He too, just popped out a set of chompers in a few days, looking not only like he was wearing a toupee, but also had a set of dentures.

For the last couple of weeks, though, my daughter has been damn near impossible to handle. I find myself on edge almost constantly, because the slightest rustling of the wind through my orchids, or the air conditioner clicking on will catapult her from sleep to wake. Once she’s awake, there’s almost no getting her back down until her next scheduled nap time.

With two other children, two dogs, two cats, and a husband who is not home, I’m sort of at my wit’s end (one may argue that I never had wits about me anyway, an accusation that is neither here nor there.).

The phone dares to ring and I verbally rip the face off whomever is unfortunate enough to call.

The neighbor comes by to see if I need my lawn mowed, and I cry, because the commotion woke Amelia up, and I cannot fathom another swaddle, bounce, pat, binkie, bottle, binkie, thrashing, sweaty, restraining I-love-you-baby-but-fucking-go-to-sleep session.

Alex operates on top volume whenever he is awake and my dogs like nothing more than to bark at innocent caterpillars that crawl in our front yard, and I. am. spent. Exhausted.

Sometimes, I cry into Amelia’s head, her tears mingling with mine, as we’re both incredibly frustrated by the situation: she cannot settle and there is nothing either of us can do about it. Other times, I just grind my teeth, giving me such migraines that if I had the luxury, I’d be incapacitated, in bed with my eyes closed.

We’re stuck here in this holding pattern.

This, I think, this is the real ass-kicker about having had a child whose life was, at one time, in flux: how can you possibly be upset with someone who you worried so very much about losing? I imagine this happens to many parents-of-children-who-survive-a-massive-trauma.

Life isn’t fair, you know this as you weep over your child in the NICU, the monitors alarming, the staff flitting from one emergency to another, because if it were, no children would be sick. Ever.

And somehow, after all that anxious uncertainty, all that worrying, teeth-gnashing and terror, your child was the one who made it out alive. His neighbor in the hospital may not have been so lucky and you know it. You’re blessed to even have this child. It’s like chewing on a piece of aluminum wrapped candy: sweet and shockingly painful at times.

Because you’re human, too.

I know how lucky I am that Amelia made it and is normal. I know that most children with her diagnosis don’t come home alive and breathing. I’ve watched my friends mourn their lost children and cried with them. Because the world–it is most certainly not fair.

But she–my daughter–she is a child, a human child. And if I know anything about children, it’s that they can make you so crazy that you’re nearly sane again. I’ve been through two of the toughest children already, the sort who screamed, and cried, and nearly (in the case of Alex) drove me to the brink, and I know that this is what kids do.

She’s not like other kids, and yet she is, and it’s this that is making my head spin.

I feel guilt, such massive crushing guilt, whenever I am at the end of my rope, like today. Today she slept for maybe an hour total, which is far, far less than she needs. And yet there was nothing, not one single ever-loving thing that I could do about it.

There’s that niggling part of me in there, too, the part that wonders if maybe her head is hurting her. I mean, she was born with a malformed skull, she has an implant in her head to correct it, and her head is growing. I know this because her scar is stretching, nearly taking up most of the back of her head now.

Or maybe it’s a new symptom of something more sinister. No one was able to tell us much of anything about her diagnosis besides it’s name (encephalocele) and what it was (neural tube defect). We’re not-so-casually waiting to see what happens next because no one knows precisely how this will affect her.

She could be normal, she could be profoundly retarded, or somewhere in the middle. Her issues with sleeping deeply may resolve themselves in a couple of years, like Alex’s did, or maybe she’ll be a Lifetime Member of The Unisom Club like I am.

On days like today, when I worry that the nape of her neck is becoming disproportionally large by comparison, and that the top of her head has begun to point in a cone, I can’t seem to talk myself out of it. Telling someone who is genuinely afraid of something–logical or no–to not worry is like asking them to hold their breath for a year. Or a week.

Im-freaking-possible.

I don’t sit around all day, every day crippled by grief and worry, and I try to live in the moment and not the might-be’s or the may-have-been’s because I know that they go nowhere.

And yet, this is who I am now, someone who hyperventilates in hospital parking lots and worries that every little stupid thing is the mark of something more sinister.

So I wait, and I watch, and I worry and I hope that some day we will all look back on these days and laugh.

And I hope.

I hope.

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