friday faves - before dawn

Hiss. Buzz. Crackle. All night long, every night, I listen to the monitor from hell. Got to replace the battery to see if it will stop its loathsome sputter. That monitor is one of those things that we can’t live with and we can’t live without, had been there for us when Calvin had a seizure in bed while we were eating dinner once. We’d found him mangled, partly on his stomach, partly on his back, with his face smashed into his down comforter. Finding him like that made me wonder, if we hadn’t had the monitor, would he have suffocated during that seizure? Would we have gone up to bed that night to have found him dead, like some parents of kids who have epilepsy do, like all parents of kids who have epilepsy dread.

The downside of using the monitor is that I get very little sleep, waking to every stir, swoosh, sigh, whimper, snort, rustle. This morning, long before dawn, not unlike the previous five mornings—perhaps the previous five years—I awoke to the sound of my boy smacking and rubbing his forehead, likely due to a headache either from his new anticonvulsant drug, his ear infection, or both. So I repositioned him and covered him for what felt like the millionth time, and gave him a Tylenol and a sip from his bottle. Within forty-five minutes he was asleep.

In sheer exhaustion and exasperation I crawled back into bed angry at the world. Through the windows I watched the familiar, black pines swaying gracefully in the wind, heard the chimes' melancholy tune, thought about Orion and the man on the moon hanging silently somewhere in the sky over our house and felt sorry for myself. And then, my mind wandered to another family who might be sleeping under Orion's gaze, whose father wrote to me last fall about his son who, at the time, was hospitalized for a risky, medically induced coma to try and stop his seizing:

no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Then I realized how so many of us have it hard, some more than others, and I stopped feeling sorry for myself, wanted the hurt of others to go away.

Calvin slept soundly the rest of the night and didn’t wake until six. I rolled out of bed feeling somewhat rested and thankful that we weren’t in a hospital, thankful that the night’s anxious, hopeless, melancholy dissolved some with the dawn. And reaching over to turn off the hissing monitor I heard my child’s sweet eager coos calling for his mama, even amongst all the hissing and crackle—and I felt grateful.

In honor of epilepsy awareness month, please share Calvin's story and help bring us one step closer to a cure. It's as easy as pushing a button. 

Give to cure epilepsy: http://www.calvinscure.com

Originally published 11.20.11.

photo by Michael Kolster

coffee with mike

When I found out I was pregnant I quit my job. I wanted everything to go right, to be perfect, and working that job six—sometimes seven—days a week for months on end was not only stressful and demanding, it was thankless.

After resigning I spent each day swimming a mile at the college pool down the street, strolling wooded paths with our dog Jack, reading books and practicing my hypnobirthing script. Often, I’d make the scenic drive south to meet up with my friend and former co-worker, Mike, for coffee.

When Mike and I first met it didn’t take long to feel as though we were kindred spirits. Neither one of us truly fit into that particular corporate mold—me in my Frye boots and vintage clothes, Mike with his crisp pink shirts, longish wavy hair and southern drawl, not to mention our kooky natures. We stuck out in a sea of bland khakis, plaid button-downs, twinsets and driving mocks.

Over coffee we’d shoot the shit, laugh and he’d catch me up on friends and crises at work, but we’d focus on family, on his two beautiful children and on my growing belly. There was something soothing and reassuring about his smooth accent and the glint in his eyes. Ours was a platonic relationship steeped in fondness for the person we saw seated opposite us sipping a latte.

Eight weeks before my due date my husband and I got dreadful news during a sonogram: the lateral ventricles in our baby’s brain were enlarged. We traveled to Boston for some exhausting, extensive testing after which the pediatric neurologists recommended we deliver our son five weeks early, by cesarean, to prevent any further brain damage, but not so early as to risk respiratory problems. Utterly despondent, we were sent home to rest up a for couple of weeks before the scheduled delivery.

A few days after our return from Boston I met with Mike for coffee. I could tell by the look on his face when he saw mine that he knew something was terribly wrong. Tears stung my eyes and spilled into the corners of my mouth as I told him the harrowing news about my baby. He reached across the table and held my hand. The coffee shop spun with eager addicts waiting in line to get their fix, others buzzing around small tables talking shop. I remember thinking that the familiar faces sitting behind us probably suspected an illicit affair between Mike and I. Neither of us cared. We held hands for what seemed like a part of forever, his firm grasp saving me from careening over the edge of grief in that black moment, kept me grounded and safe. Mike listened with an intensity in his eyes worthy of the brother that he had become. I felt empathy move through his fingers, saw it well up in his eyes. He told me that he loved me and, with a quiver in my throat, I returned the sentiment. In that moment, we grieved my loss together and forgot about all the rest which, in the scheme of things, didn't really matter.

photo by Michael Kolster

questions

I roamed the house in pitch-blackness, my eyes popped out like saucers thinking I might see my way around better that way. The power had gone off, and with it seemed to go all sound, save the drone of a neighbor’s generator.

I padded my way to Calvin’s room where I keep a mini flashlight atop his dresser for nightly use repositioning him in bed. I looked in through the netted canopy, saw him jack-knifed and uncovered, fast asleep. As I snuck downstairs to fish out matches and a lantern I thought about the tens of thousands of people stranded in the dark—for weeks now—in the wake of Hurricane Sandy. They don’t have heat they don’t have light they don’t have refrigeration they don’t have hot water and they don’t have computer access. I thought about the kids like Calvin and their parents, the elderly and the infirm who are living in cold, dark, damp, moldy, insecure homes, if they are lucky enough to still have a home at all.

I had spoken with the neurologist’s nurse at length earlier in the day. I had a lot of questions for her, some that I voiced, others that simply rattle around in my head on a continual basis:

Why is Calvin having so many seizures again? Was Saturday’s seizure because we reduced his Banzel? Are there withdrawal side effects? Was it a withdrawal seizure? Will he keep having more? Will the seizures level out after his body adjusts to the lower dose? Can we go up on his Keppra or his Clobazam? What about trying Vimpat? Will his appetite improve? Will his balance improve? Will his behavior improve? What kind of seizure was it ... it was so different ... so long. Should we have used the rectal Valium?

These are vexing questions that are etched into my mind, ones that I’ve asked before about other seizures, other drugs, and ones I’ll be asking again. But as I set the lantern on Calvin’s dresser, reached in and covered him up, I felt his warm skin and thought about the shivering masses in New York and New Jersey then asked myself, why are we so lucky? And as I crawled into bed I was thankful for all that we have, and certain that the power would come back on soon, before it got too chilly.

Associated Press

how small you are

Sometimes you have to go up really high to see how small you are.

—Felix Baumgartner 

eleventh night

his face
pale like the moon

on a cold silent night

or the red planet Mars

bled of all that is bright
a great sea of fog

washes over his brain
a thunderous storm

or some poisonous stain
like moon tides it rises 

from miles away
I pen in my journal 

that it’s on its way

he fixes his eyes

on some strange apparition
his auras must be 

like a sick premonition
my boy arcs like a dancer

frozen in space
I call out his name

cup my hands to his face
we beckon him back

from this night’s black abyss
put our lips to his neck

and give him a kiss

he is lost to this world

in some transient state

for this war on my boy

I feel nothing but hate
he stares like a doll

his eyes made of glass
for a moment we doubt

if the seizure will pass
as hot lightening bolts
run amok in his head
 I imagine my boy

looking so when he’s dead

as the minutes tick by

he remains in a daze
I sink like a rock

in a blackish malaise
again I call out

to my raggedy doll

and he tries to get up

from his nightmarish fall
his skin starts to flush

like a gossamer lace

now a thumb to his mouth

the moon in
his face

In honor of International Epilepsy Awareness Month please share this story.

the fit

Fyodor Dostoevsky suffered from epilepsy. In his novel, The Idiot, he talks in the third person about how auras—the period preceding seizures—were of "the highest form of existence" and "the acme of harmony and beauty." He writes:

He remembered that he always had one minute just before the epileptic fit when suddenly in the midst of sadness, spiritual darkness and oppression, there seemed at moments a flash of light in his brain, and with extraordinary impetus all his vital forces suddenly began working at their highest tension. The sense of life, the consciousness of self,  were multiplied ten times at these moments which passed like a flash of lightning. His mind and heart were flooded with extraordinary light... But these moments, these flashes, were only the prelude of that final second in which the fit began.

He goes on to say:

At the very last conscious moment before the fit began, he had time to say to himself clearly and consciously, "Yes, for this moment one might give one's whole life!"

If only, in the face of most reliable and continued seizures, I could know that it was so for my son Calvin. 

Fyodor Dostoevsky (1821 - 1881)

losing my mother

I’m losing my mother by bits and pieces, like grains of sand slipping through my fingers. Her brain seems just as they describe it, like Swiss cheese, although I think of it more as cheesecloth, all cobwebby and frail.

We speak on the phone every couple few days. By her tone I can tell she knows it’s me, at least at first. In most conversations of late she asks me where I am, how long I’ll be here and when I am coming to visit. We do-si-do around these topics for ten minutes or so as I sprinkle in some questions of my own.

“How are your knees?” I ask.
“Oh, they're pretty ... easy,” she replies, and by that I understand they aren’t hurting her too much.
“What’s the weather like today, Mom?”
“Not so good, stuff is coming all over and it’s ... heavy,” she explains, and I confirm that she means it’s rainy and grey.
“Yes! That’s exactly!” She adds.

Mom turned eighty-three on Election Day and I asked her how it felt to be that old.

“That can’t be!” she exclaimed.
“So, how old do you feel, Mom?”
“Well, I hadn’t really thought about it.”
“Fifty?” I asked.
“No, not quite.”
“Sixty?”
“I think you’re about right.”

That day was a good one for her. She seemed more lucid, sharp.

“Mom, you’re great,” I continued.
“Well, thank you veddy, veddy much,” she spouted in her usual upbeat way, “but you’re the great one.”
“You know why I’m great, Mom?”
“Because you’re my daughter,” she answered plainly, and I knew she was on her game.

Today’s conversation wasn’t so good, though at least she was happy-go-lucky. I told her about Calvin and she asked when she’d get to meet him, forgetting that she’d met him before. I mentioned the difficulty in traveling with Calvin and she wondered why. “Well, Mom, because he can't talk and he can't walk by himself and he's still in diapers, so it makes travel hard,” and I went on to explain about his seizures and the drugs. “I'm so sorry,” she said in a sad tone, “will he ever ... grow up?” I told her I wasn't sure but that I didn't think so.

“When are you coming to visit?” she asked for the third time.
“I’ll try to get out there in the springtime, Mom.”
“OHHHH! That would be super-duper! I better write that down somewhere so that I remember,” she added, concentrating.
“I’ll remember for you, Mom, you don’t have to worry about a thing.”
“Oh, all right, if you say so,” she piped.

Then she asked me again when I’d be visiting.