sleepless dreams, stardust and carbon

another sleepless night without real dreams. my son, every half hour sitting up in bed and banging. sometimes cackling. tonight doesn't look too good for us or him. hours later, about to drift to sleep. that's when the squirrels begin gnawing and scratching in the eaves. the sound is unsettling. michael pounds the walls hoping to disturb them. i pray calvin stays asleep. at three a.m., just after finally going under, i hear the scream. this time it's muffled and brief. still, i know its meaning: our son is seizing. we rush into his room. unhook his bed's netted canopy. let down the safety panel. protect his spasming head and wrists and feet. call his name trying to reach him in his seizure-dream. blood and saliva begin trickling from between his lips. when it's over, i gently nudge his mouth open to find the wound. a bitten tongue or cheek. a pool of blood lets loose a scarlet stream. i think of rivers rushing to the sea. i stroke his moonlike face with love and sorrow. then i slowly syringe cbd oil inside his opposite cheek.

before i crawl in with him, i drink a glass of water and pee. outside, it's crisp and black and in the teens. pinned in the sky behind the glass i see orion. i think of emily's little ronan, gone now for how long i don't remember. i used to see orion as his guard. perhaps he's out there in the stardust.

in bed with calvin. michael tucks in a pair of curled-up bodies. in my arms calvin goes to sleep. for me, shut-eye remains elusive. in darkness, i think of little charlotte who has influenza and is fighting off pneumonia—a grave danger for our fragile children. i send a little mojo off to colorado.

my thoughts tumble to our mate who died last august. in our care, he left behind stacks of plastic bins and cardboard boxes. clothes and tools, gloves and socks and shoes. in my sleepless dreams i'm back to sifting through them. a wide-brimmed hat with snaps attracts me. my head is swimming in its blackness. in search of him, i sink my nose into a dress shirt. it smells of soap and plastic. i find him nowhere in its cool soft fabric. it hurts to miss him. he was like a brother-son to me. he has returned to stardust. never again to feel pain or be sleepless. now he is beautiful carbon. he wore that color often. he chose it.

it's not long before my boy awakens. just as my sleepless mind is dreaming of our new year stroll beside the ocean. we were three, not counting calvin. in a perfect world he would have been there with us, skipping, running, tempting white waves crashing at his feet. sprinting up then boomeranging with some precious found thing. a rock. a shell. driftwood. a reed. i picture him making long shadows and sandcastles and scraping his name into the beach—as many grains of sand as stars and planets. but he cannot do those things. instead again he stayed at home, his brain planning its next assault on him. i can smell impending seizures on his breath and fingers, on his drool-soaked shirts and robe. still, we can't escape their orbit. my billion-year-old carbon child, though reeling through his life half-blind with seizures, is not yet stardust. he's there at home to greet us. i hold him closely. i dream of calvin even when i'm sleepless.

moon and stars

He howls as if at the full moon. It hangs in the sky like a weight, presses down on me. I used to be drawn to it, but now I feel only dread and wonder: dread for the seizures that seem to flank its coming; wonder at how it seems to tear and pull things apart then smash them back together. I see the moon in my son’s round face—his glowing complexion, his pools for eyes. I doubt he’s ever seen it himself, always drowning in a drugged-up sleep under its rays, never out at night gazing at the sky so full of stars, but which his weak eyes can’t possibly see.

Stars. What are stars? I cannot explain, cannot point in their direction or cast out a net to catch a falling ember before it expires. No star burns bright enough to inspire him to reach out and touch. Their points of light all dissolve into black, melting into the tops of trees and blanketing a field, a meadow, a sea. Stars mean nothing, reflect nothing, to a boy who cannot see them nor contemplate their mass or the spaces in between, nor know what is it to wish upon one that is falling.

photo by Jeff Berkes

potential

From behind, I watch Michael pin them on their backs while stabbing them each through the head. For a moment, they squirm as he draws the knife into the belly of their shells and through their firm white flesh. Then, he gathers fresh chives from the garden while I make a salad slicing in a handful of yellow, orange and red tomatoes from our neighbor’s garden.

I ask if it bothers him to kill them like that. “You gotta kill them anyway,” he replies, and I imagine the familiar rattling lid atop a steaming pot of lobsters—lobsters that have been randomly plucked from the frigid Maine waters, perhaps having not yet reached their full potential.

And then, for whatever reason, I think of Calvin who at some point in his development ended up missing a significant amount of the white matter in his brain, and thus will end up missing every milestone never reaching his full potential as a boy or as a man.

My mind segues into the questions I often ask myself: what might happen if Calvin dies before reaching puberty or adulthood? succumbing to epilepsy’s prolonged and lethal seizures. What if we’ll one day wake to find him still and cold? a victim of SUDEP (sudden unexplained death in epilepsy.) I wonder if, in that case, I’ll feel twice robbed, first having a child born with so many afflictions, and second if he dies early. Would it all feel such a colossal waste? having been so goddamn hypervigilant about his health, his safety, his various therapies for growth and development and seizure control—watching each step, minding every corner, suffering each seizure, counting each pill, logging every shit, grieving every loss, fretting every procedure, enduring day after monotonous day of a life that often feels like it’s going nowhere fast.

Sometimes I study his perfect little body, his willowy muscles, long slender fingers, soft belly, mild facial features and I think of all the potential he might have once had ... before his brain went wrong, before the seizures took hold, before the drugs sunk in.

In the cool dark of the screen porch I pull a lantern close to my plate which cradles a baked lobster. I pierce its flesh with my fork bringing it to my lips, a curling ribbon of steam in its wake. The morsel, crowned in buttery panko crumbs, melts deliciously in my mouth. Then I crack the claws with my hands and lick the brine from my fingers one by one, thinking that the lobster’s potential having been—in some strange way—met.

After dinner I stand for a time in the darkness of the back yard with Rudy. I search the night sky for any familiar constellations—Cassiopeia, Orion, the Big Dipper—though I find none. But I catch a shooting star whose trace is fleeting, abbreviated. But it doesn’t matter. It is beautiful anyway. The glitter up there makes me think about how all that star dust lives in me and in Calvin who sleeps soundly under their canopy. And then I realize that every day my boy meets his potential simply by being, by loving and accepting of love and by living in the moment, shining brightly like that shooting star—however brief—or like that bit of warm lobster resting on my tongue.

photo by Michael Kolster