My Daughter’s Spine, 2

[An update to this post]

The spine doctor moves his mouse, figuring out how the two-dimensional images of my daughter’s vertebrae on the computer represent a three-dimensional thing—her spine. At the top and at the bottom, her spine looks straight. The vertebrae are stacked like symmetrical stepping stones, leading toward her brain. But the stones go awry in the lower-middle half. They curve left and then curve right, like whoever laid the road to her brain either really wanted to meander, or didn’t have symmetrical stones, so they used the best they could find.

The best they could find, we learn today, was a wedge-shaped, amorphous vertebra that forces the spine to curve 34 degrees in one direction, and two odd-shaped, chunky vertebrae that force the spine to curve 37 degrees in the other direction. One symmetrical vertebra separates the two problems, like the cells of her body suddenly remembered how to make a proper spine.

The good news: her spinal cord ends where it should. It’s not tethered. It’s free to hang loose. Apparently that’s what our spinal cords do: hang loose. I think of the slang of the phrase. My daughter’s spinal cord is relaxed, chill. No surgeon will need to go in and snip it.

And more good news: her scoliosis is not caused by any barred vertebrae, which would mean the vertebrae are linked together on one side, which would mean the vertebrae would continue to grow on the un-barred side and stay locked on the other. This would mean an ever-worsening scoliosis, and most definitely surgery.

There’s growth potential on all sides, the spine doctor said. He explained that we weren’t out of the woods just yet. Because the problem spans across four vertebrae, and because Fiona is incredibly small, and because operating on any vertebrae will essentially stunt her growth in that area forever, there’s no good reason to operate at this time. And because there’s growth potential on all sides, the curve just might improve.  So for now, we wait and see.

He stares some more at the screen. Though it’s obvious why her spine curves in one direction—one vertebrae is clearly only half-formed, a funky, white pebble mucking up the otherwise symmetrical alignment—he can’t quite determine why the two lower, chunky vertebrae are causing the curve in the opposite direction. Extra bone? he muses. He suspects extra bone. So we have one vertebra with not enough bone, and two other vertebrae with too much—just another wacky result of those 120 missing genes.

But here’s the wild thing, at least to me: Because her curve is 34 degrees in one direction and 37 degrees in the opposite direction, the abnormalities have the strange effect of giving her a near-zero degree curve. For now, they cancel each other out. This means that, currently, there’s no compensatory curve in the higher or lower parts of her spine. It’s like those unaffected vertebrae have no idea of the serpentine nature of her middle spine. They’re just plugging away with their beautiful, straight growth.

In other words, my daughter’s imperfections are perfectly imperfect. It’s hard not to hear the metaphor there.

Minor Miracles

Each weekday the therapists come. They knock on the door. They tote their bags of plastic light-up toys. They play with Fiona. The occupational therapist tries to get Fiona to chew with her molars and suck from a straw, and the physical therapist tries to get Fiona to take steps with a walker, and the speech therapist, among other things, tries to get Fiona to stop throwing toys when she’s done with them. Ping—balls and blocks and puzzle pieces get chucked sheer across the room. The therapists work on these and many more tasks with such diligent un-success that I sometimes forget this road we’re following is supposed to be aiming toward progress. Progress — that gleaming Emerald City that sometimes seems just as far with every step forward. Goodbye, I tell them cheerfully, and then pluck Fiona off the ground and go on to other parts of the day.

It dawned on me this evening, though, that in just two days, every one of Fiona’s therapists celebrated something new about her. And these are not Ra-Ra women. These are realists, which I always appreciate, which makes their praises all the more meaningful. Fiona so persistently has not done the things they praised her for lately that her doing these things feels miraculous. And because I’ve posted my share of hard blog posts lately (here and here and here), I thought I’d better do a little singing about the good stuff:

She chewed with her molars!

She pursed her lips around a straw!

She handed a toy back to an adult!

She took steps with her walker without her PT prompting her legs!

And today when I brought her a bowl of steaming oatmeal, she said, “Hum.”

Why is this last one a feat, you ask? Because after about a week of telling her, “It’s hot. Hot-hot,” to explain why I couldn’t offer scalding oatmeal to her whining mouth just yet, she repeated her version of the word: “Hum.” (M is the only somewhat hard consonant she can do, so she’s approximating “Hot” as best she can.) Now, when I say oatmeal, she says, “Hum.”

We’re getting there, minor miracle by minor miracle. Where’s there, exactly? I don’t know, but it’s farther, gloriously farther, from here.

Three Ways to Interpret a Blink

The blinks come hard. Not flickering or spastic like I saw in a seizure video, where a boy in a highchair tensed from what seemed like an electric shock as his eyes blinked rapid-fire. No, her blinks are isolated, far apart. Blink…. Blink. And nothing else in her body seems disrupted. But as I said, they’re hard, like exclamation points, her lids squeezing tight. What is she doing? Why is she doing that?

And here begins the Choose-Your-Own-Adventure of special needs parenting. Option 1: She’s having seizures. This is where my worrying mind goes, faster than a blink itself. Seizure, seizure, seizure. (See How to Detect a Seizure for a snapshot of this low-level state of anxiety.) Turn to page 65, the Choose-Your-Own-Adventure books told us as kids, and on page 65, we’d learn if the monster was really behind the door.

But there is no actual book here. Just fact and truth mixed with smoke and mirrors, all spinning possible stories in my mind. Deeper into the “It’s a seizure” story, I know future pages would bring: a new neurology appointment, another EEG, daily meds and the adjusting of doses and the cost-benefit analysis of fucking with one’s brain when one’s brain is fucking with oneself. Option 1 is stomach-churning, a heap of stress on top of the already stressful. So Option 1 is followed immediately by denial, that turning of the face to admire something, anything else—a sunset, a tree—even as monster-shaped shadows might very well be creeping closer.

And so, Option 2: She’s got something in her eye. That must be it. An eyelash. A fuzz. A strand of the wool carpet that sheds like shedding is its job. She’ll blink it out. End of story. This stupid Choose-Your-Own-Adventure book will get chucked and forgotten by tomorrow, its pages curling upward with too much reading and wetness. I’ll laugh about it. Hey, remember when I thought an eyelash was a seizure? That was crazytown. Silly me.

Option 3 doesn’t present itself as an option so much as a revelation. Out of the blue, I wink at her. I wink at her because the conversations we have get tiresome, with my words and words and words, and with her mm’s and mm’s and mm’s. I wink because it is another way to link up with my bright-eyed, non-verbal girl, to say, “We’re in this, kid,” and “I love you, kid.” I wink.

Then, hard as any exclamation point, she blinks right back. Eyes squeezing tight. She’s not compelled by some brain-misfire to blink, nor is there anything, a single micro-fleck, in her eye. She’s not squeezing a monster out of her vision. Dear God, she’s trying to wink back.

I smile. I laugh. She smiles. She blinks. It’s awesome. Out of all the things we are trying to teach my daughter—how to wave goodbye, point her finger, push a button, drink from a straw, chew with her molars—she has decided to devote her energy to blinking. I laugh again until I sigh, and I sigh at this:

In another parenting universe, where my daughter has no such thing called Wolf-Hirschhorn syndrome, a hard blink would not be an adrenalin trigger. In another parenting universe, my fight-or-flight response wouldn’t be always at the gate, always at the ready, waiting for the gun to say Go.

In this other parenting universe, my first hours as a new mother would have elicited those bliss chemicals I’d heard about in my natural birthing classes, a cocktail so potent that women describe falling in immediate love with their slippery, naked babies. Instead, there was a tightness in the midwife’s voice when she told my husband, “Cut the chord,” and when he said, “But we were going to wait until…” she barked: “Cut the chord!” My four-pound-something mystery was whisked away. And thus began my motherhood: With panic. With fear. With a monster on the very cover of the book.

There are few things I curse, but one thing I curse is this: I didn’t get the first hour to melt fearlessly in love with my child, to bathe in the warmth of oxytocin and bliss. At the very start, the very first second of this motherhood road, the very first sentence of the story, there was fear. Adrenalin showed up like a snorting, anxious racehorse, then and forever at the ready, at the gate.

So what I mean to say here is this: Even as I love when my daughter eclipses my fear with pure delight—she’s trying to wink, and it’s super cute—I also mourn for the life that doesn’t have to hold these two things—the fear and the delight—in such painstaking balance, on such an even scale.

She blinks. I wink. I smile. I sigh.

To Drill or Not To Drill A Hole in Her Gut

Last night I dreamt that Fiona walked. Just stood up and toddled around, nearly a foot taller than she really is. The dream was all fog and blurry vision, but just like that, she walked.

In waking life, Fiona is nowhere near walking. She still prefers lying flat on her back, arms fisted, eyes staring at the ceiling. She’ll pull herself up to sit, grab for something, lie back down. Gravity is her ruler. Against it, her willowy body has trouble putting up a fight.

Everyone’s talking calories. We have met with a nutritionist, a dietician, a GI doctor. We have talked with her pediatrician and her feeding therapist and her early interventionist. Fiona is not taking in enough calories. I know because I add them up each day in a little book. A friend of mine gave me the book for my own writing. Instead, it’s filled with calorie tallies. As is my brain. I know by heart the calorie counts of all the foods Fiona likes. Slice of wheat bread, 100. Jar of sweet potatoes, 80. Jar of peas, 50. Stick of mozzarella, 80. And on and on. Today we are at 210. It is 3 pm. We might make it to 600. This is how I count the day’s progress: in calories.

A nutritionist from Burlington drove three hours to see us. Her conclusions: we are doing an amazing job. We are doing everything she would recommend. We are doing all that we can.

You can’t force her to eat, the pediatrician says.

No, but you can force the food into her through a tube.

And so the question: does she need a tube? Her body is a willow tree. She grows long but never wide. Three-month pants still fit her waist, even as they don’t go past her shins. This is typical for kids with Wolf-Hirschhorn. String-bean-shaped, I call her. But is she getting all the nutrition she needs? Would she have more strength if she could get more? I tend to her string-bean body all day long. I dress her and change her diaper. I adjust her body’s positioning so that it’s ideal for her development. I offer spoon after spoon of food. Most of the time, she refuses.

This person says we need a feeding tube. That person says it’s not worth the risk.

This person says, from a nutritional standpoint, there’s nothing to lose by getting a feeding tube. That person says, for every child that takes well to the tube, there’s another one who has complications. So far, no doctor says it’s time for the tube.

You need to eat, we say all day long to her. When I leave the room to meditate, Justin’s voice cuts through the closed door. You need to eat, I hear from my cushions. I inhale, repeat my prayer word, exhale. I don’t pray to ask for things to be different. I pray to accept them as they are. And still, You need to eat. If we have really hit our limit, if it’s evening and we’ve already tried six times that day and already offered hundreds of spoonfuls and already know that today’s tally in the little book (the book that was meant to house my writing but instead houses calories) reports a dismal day, we say, You need to eat, or we’re going to have to drill a hole in you. We don’t say this to be mean. We say it because it’s true.

Actually, I don’t know if surgery for a g-tube requires drilling. It probably doesn’t. But the tube seems that gritty to me. That crude.

Last night I dreamt she got up and walked. Today she nearly cries when her physical therapist picks her foot up and sets it down a few inches in front of her. She wavers. She has no balance. She wants to sit down. She wants to succumb to gravity.

Has there been any talk of a g-tube? the physical therapist asks, and I sigh, and sense that if she were the doctor, she’d order one stat.

How to Detect a Seizure

Be on low-level alert at all times. Security code, orange. High risk of attack. High risk because 92% of children with Wolf-Hirschhorn syndrome have seizures of some kind.

Know that her seizures do not have to look like TV seizures. Not necessarily any foaming at the mouth. Not necessarily grand tremors of the grand mal kind. Sure, those have happened. In fact, until recently, those are the only ones that have happened, and always with a fever. But know there are others:

Little twitches in a hand, a foot. Or rapid eye blinks. Or falling over. Loss of all muscle tone for one half second. Or cruelly, excess euphoria. The other day, the mother of an epileptic son wondered on Facebook, Is my baby just extra happy today, or is his brain misfiring?

There are also the absence seizures, when a kid goes spacey. As a parent of a kid with Wolf-Hirschhorn you have to look for those too. When a two year old I know spaces out at a party, I am boggled that her mother doesn’t have to wonder, Seizure? I am boggled by a life that doesn’t require that mother to shout her daughter’s name in a desperate, panicked tone, hoping the child responds, which would mean, No, the child is not seizing.

I am also boggled when my five month old rolls onto her side and jerks her arms and legs: Seizure!? I think, because I cannot help myself. But no, of course not. No seizure.

Sometimes, when one of my two children makes a spastic sound or gesture and I don’t know who it is, I look over and see that it’s the five month old. I exhale relief, thinking, Not the seizing one. If they had descriptive names, would that be hers? She Who Does Not Seize?

The seizure can be detected in the eyes. The eyes of the seizing child can dilate unevenly, can roll upwards or slantways, can appear to track an invisible star that falls in slow motion. She Who Seizes did this once: absorbed a slow-mo meteor descending the living room wall.

The eyes can fixate alarmingly at the ceiling. Lights on and nobody’s home, a neurologist once described to me.

A week ago, my husband was away for the day, two hours by car from dawn to dusk. What if she seizes? I thought, and then I pushed the thought down like a crumb into a couch cushion. What if she seizes? is a constant question I wake to, shower with, sleep with, and for the most part, she does not seize. I ignored the concern.

She was sitting on a stool so that she could work her trunk and straighten her spine. She toppled over, which she sometimes does, but when she landed on her side, her arms were faintly twitching.

Seizing? Struggling to get up? Seizing? I didn’t know. What do the eyes say? Her head was turned away from me.

I sat her up. Okay? You okay? I said, holding her body upright, trying to catch her eyes in mine. She returned the gaze, then looked at something else. Lights on, my daughter is home.

You okay? I asked again, like something in the universe would tell. The truth is, I didn’t know. I had three choices: Decide it was a seizure. Decide it wasn’t. Reside in the gray area.

I decided it wasn’t.

But the experience made me rethink a moment earlier that morning. She was sitting in her high chair. She tipped over. She sometimes tips to one side, rests her head on the tray of her chair. But this particular tip-over rang a little alarm. Mommy intuition? Paranoia? Afterwards, she clawed and clawed at a spot where no cheerio was. She gave up grabbing.

Decide it was a seizure? Decide it wasn’t? Reside in the gray area?

I am inventing seizures, I told myself.

The next day, my husband was holding her in the kitchen. She tipped to one side again, and he righted her. I looked into her eyes.

She was not there.

How do you describe when the consciousness of your daughter is gone from her body? Did I see a dilated eye? An unfocused gaze? I can’t recall. I just knew for sure: seizure.

And here is the thing that gets me: Like always, just as it happened, I called her name. I call to her like she is slipping into a well. “Fiona!” I call to her like my voice is a rope and I can bring her back. Fiona! Don’t go there. Don’t leave. I do this even though I know the medical truth. My voice won’t stop her. To seize: to take hold of, suddenly and forcibly. Neither love nor words will stop the Seize. All I can do is wait for it to end, wait for the Seize to return my daughter and hope it did minimal harm.

If you’ve made it this far, I know you’re wondering: We haven’t seen any seizures since. A new neurology appointment has been booked.