sunday morning seizures

Two days ago we increased one of Calvin’s anticonvulsant medicines—again—in our continued hope to snuff out his seizures.

This morning he awoke without so much as a grin from our tickles and kisses. Something was amiss.

While feeding Calvin breakfast his chewing became rote. Slightly flushed, his dull expressionless eyes stared off into nothingness, listless. From pink his cheeks turned the pale translucent lime-yellow of shock, of sour milk and green tea. A creepy lopsided grimace crept over his face like a mask, his lips and fingertips, lacking oxygen, dusking before our eyes. In a minute or so he snapped out of it. Half an hour later came a second, similar spell.

Calvin spent the morning restless and off balance, both of which make him difficult if not nearly impossible to handle. So we slipped him into his johnny-jump-up to finish our coffee and cereal. I put on Calvin’s favorite music only to turn around and find him slumped in his jumper. I knelt down to peer into his face. Patchy flushed cheeks suggested another seizure. Strange, telltale swallowing sounds confirmed it. I unbuckled him, whisked him out and laid him on the couch. His color and the look in his eyes warned of a big bad one. Michael rushed to the couch. Since it was Calvin’s third seizure in less than two hours, I decided to give him the rectal Valium to stop the vicious cluster from burning out of control. Calvin’s little body started convulsing badly as Michael pulled down his pajamas and diaper. I popped off the plastic lid, tore open the lube packet, squeezed a glob of gel onto the applicator, stuck it into his bottom and counted. One. Two. Three. I then removed the vial and pinched his buttocks together to keep the oozing gel inside.

Three minutes later, when it was over, Michael hauled Calvin’s limp weight up the stairs to our bed where I laid down next to him. Asleep beside me—the Valium, having numbed his mind—he drifts in a paralyzing coma. Outside the glaring sun casts cold, stark shadows on the backs of trees. It’s April and everything still looks dead. If not for chirping birds and the Cardinal pair building their nest right outside our window I’d think we were heading into a cruel bitter winter. But the sap is flowing, shining beads of it trickling down naked trunks like so many tears.

photo by Michael Kolster


  1. My dearest Christy:
    You are truly an angel; I don't know how to comfort you with words right now, but know if I was closer, I would be hugging you and taking care of you as you take care of Calvin...Stefen and I both send ALL of our love...

  2. Hi Christy,
    I do not know if you remember/know me, but I am Margot's Mom, Carey Stokes-Curtis. I just wanted to say thank you for this beautiful Blog, we have very similar stories and it is comforting/informative and often heartbreaking to read your posts. Margot too has infantile spasms and intractable epilepsy and we have been on every med. and combo of meds. but nothing has stopped these seizures. We had great success with the Keto diet, but decided to take her off temporarily so she could get a gtube , but we are restarting next week! It would be great to talk...Take Care