pink dawn. stove top espresso with warm milk waiting for me just like every morning. the smell of freshly-baked cheese bread. a slice of it warm with butter. great-feeling, sub-freezing pennellville 10k. black-camo and leopard-print leggings. puffer jackets and running gloves. day-glo yellow running shoes from joanie. calm water. day eleven seizure-free for calvin. hot shower. danish coffee cake from wisconsin. a fire in the stove all day long. smiling child. funny husband. cozy home. stained-glass window. quiet streets. the structure of winter trees. moss and lichen. red berry. tufts of cat tail blowing in the wind. pumpkin and pecan pie. panoramas. old friends and pandemic ones. running for miles in the wide open. the freedom it gives me. running with smellie on the trails. seizure-free child, at least for now. candle light. lilies in a blue vase. michael's students coming over for a thanksgiving meal. herbed, spatchcocked turkey. fresh green bean casserole with fried onions. garlic mashers. honey sherry shallot carrots. sunlight through trees and old wavy-glass windows. music on a kick-ass stereo. dancing like a maniac in the kitchen (makes michael smile and laugh.) gigondas. a bit of bourbon on the rocks. wicked-smart and hilarious neighbors. gatherings. laughter. friendship. drives on the back roads. gratitude galore.


seize, grieve, repeat

The night's torrent had begun to wane. Its pummeling on our red metal roof had dissolved into a soft patter. The happy, excited voices of college partygoers passing by our house had trailed off just before two a.m. I had gotten up to use the bathroom and had checked on Calvin to make sure he was positioned well and covered. It seemed he hadn't moved for hours.

Not long after I closed my eyes again, my son's seizure scream cracked the silence. Despite the stormy weather, I hadn't really seen the seizure coming; it was day forty-five in a seizure-free stint, one of his longest in years.

After nearly two minutes, when the grand mal was over, I dripped two milliliters of my homemade THCA cannabis oil into the side of Calvin mouth in an effort to stave off a subsequent attack. Then I crawled into the small space next to my boy-man whose soft childlike cheeks are now regularly peppered with stubble. I held him close so I could monitor his breathing; SUDEP—Sudden Unexpected Death in Epilepsy—is a menace for young people like Calvin who have intractable epilepsy, and is thought to occur because of disruptions in cardiac and/or respiratory activity in the wake of grand mal seizures.

Regrettably, this morning Calvin suffered a repeat of yesterday's 2:00 a.m. seizure, but this time the extra cannabis oil I gave him did not thwart an ensuing one. I wish I had thought to give him an emergency dose of nasal Valium, but in my sleepy stupor it slipped my mind until the seizure was already over, when I was loathe to give it. But during his third grand mal in just over twenty-four hours, I gave him the nasal Valium to stop the cluster from evolving further.

Today, my sweet boy is a bit better than yesterday. I still don't know what caused the cluster after forty-five days of seizure freedom. Was it the storm and its low barometric pressure? Does he have an underlying illness? Was it the sucrulose (which I hadn't initially noticed) in the different brand of Greek yogurt I gave him? Is it that his body is habituating to the newest epilepsy medication, Xcopri? I will likely never know. I'll just sit here and hope, at least for now, that he doesn't have any more.


holding onto hope

i'm holding onto hope ...

hope that calvin can continue his seizure-free days past thirty-six. hope that somehow we can get him—once and for all—off of the bloody keppra. hope that his body will one day settle into something approaching calm. hope that he isn't feeling pain, hope that he stays well. hope that eventually, within our lifetimes, someone will find a cure. hope that at some point i don't ever again have to watch him seize.

i'm holding onto hope ...

hope that i can continue to run on the trails and roads, to feel its freedom, the sun on my face, the wind through my hair and the sound of it through the treetops. hope that i stay healthy and fit for many more years. that i remain young at heart (though that isn't really a worry.) that i remain injury free. that i can keep taking care of calvin, at least for the time being.

i'm holding onto hope ...

hope that calvin's school goes forward to be a safe and welcoming place where his typical peers continue to gain insights from his presence and energy. hope that more people in this world and nation begin to value difference and diversity. hope that young people keep learning the truth about this nation's full and true history. hope that everyone can get a bit away from their gadgets and, instead, get back to communing with nature.

i'm holding onto hope ...

hope that women won't lose the legal right to be equal citizens in this nation. that people can agree that healthcare is a goddamn human right for everyone. hope that the separation of church and state holds (at least to the extent it does.) that more and more people vote, and are not burdened by difficulties or dangers accessing the polls. that the election is free and fair. that people honor the outcome. that people stop believing the lies they are being told about a so-called stolen election. that extremists and liars lose. that violence doesn't rise up, but if it does, that it is quickly quelled. that democracy holds.

i'm holding onto hope ...

that one day leaders, and others, of this beautiful world will put aside their egos, their fetishes, their power lust, their deceit, their bombs, their guns, their crowns and swords.