too good to be true again

When my boy walked hand in hand with me all the way to the fields, then traipsed around on the turf all by himself, then marched home straight as an arrow, I asked myself, is this too good to be true?

Yesterday Calvin had an outstanding day. He was smiley, affectionate and calm. He ate well and walked further and better than he has in his entire life. I thought I was beginning to get a glimpse of what life might be like once he is completely off of the benzodiazepine that we’ve been weaning for over six months, though we’re only half way there.

Last night, Michael and I sat down in front of the fire with savory bowls of Scotch broth as we listened to The Moth Radio Hour on NPR. I had the baby monitor perched on my shoulder because something just didn’t sit right with how Calvin’s day had been and I wanted to hear every sound. Besides, it had been ten days since his last seizure, a recent average, so in my mind he was due. Between bites of salad, I heard a little peep, like from a cricket or a mouse, and I ran upstairs, tripping over my pointy boots and falling on the top step. Once in Calvin’s room, I peered into his bed to see his eyes wide open and vacant. He was having a seizure.

The seizure was flat, in that he didn’t convulse, shriek or gasp. I think it was a complex partial seizure, the kind he used to have several of in any given day that often culminated into grand mal seizures that would last over twenty minutes landing us in the hospital.

I had just given him his cannabis oil an hour earlier at bedtime, so I hesitated giving him more. Instead, I climbed into bed with him and when I woke just before midnight I went downstairs, loaded a syringe with a dose of the oil, brought it with me into bed, tucked it into the side of my sleeping boy’s cheek and squirted it into his mouth. At four o’clock he woke, but thankfully not to a seizure, and after thirty minutes of fussing and flailing, a diaper change and an ibuprofen, he went back to sleep in my arms.

Nearly dead to the world two hours later, I awoke feeling Calvin’s body cramp and stiffen around mine. I called to Michael that he was having another seizure. Calvin’s legs and arms were bent and drawn up the way I’ve seen in photos of corpses with rigor mortis. His entire body was convulsing, somewhat violently, the way he used to years ago before he began taking Keppra. While he spasmed I stroked his body and kissed his neck, felt my worried brow draw up into stitches. After the convulsions subsided I gave Calvin his clobazam early. He swallowed it and went back to sleep, then woke up crying thirty minutes later so we gave him an acetaminophen suppository.

I lament that I worry not only when Calvin is sick or whiny, manic or not drinking or when his balance is off, but also when Calvin is giggling just a little too much, when he is unusually calm, when he walks without balking as if he could walk for miles. I worry because this epilepsy thing just doesn’t let up, doesn't give us any slack. For better or for worse, I’m tuned into that, can almost feel it in my bones when something isn’t quite right, when a seizure is on the horizon. Sometimes I can even smell it on his breath and it sickens me.

Calvin is asleep again now. I’ll be listening with my bionic ears and watching him like a hawk today. Two seizures can easily mean there will be a third. I hear him rustling now. Off I go.

photo by Michael Kolster


  1. Sometimes your life is so parallel to mine that I wonder where we leave each other off --

    I hope today goes well. I hope it's boring, that there are no seizures nor anything out of the blessed ordinary. I hope that it's extraordinary only if that means calm and no seizures.

  2. It's wonderful you were able to see Calvin at his best and to enjoy that day. I understand your suspicions, however, whenever those good moments occur. Robert often gets giddy which is delightful to see but I know that a seizure or cluster of them are what almost certainly follows. I'm hoping the last few days have been uneventful for you all.