day eleven

A pretty good string of days ended with Calvin’s seizure yesterday morning—day eleven.

I knew something was amiss when I was trying to feed him breakfast; he was a whirling tangle of spastic limbs—uber-hyper. Nearly poked me in the eye with an errant fist. So that he’d let off some steam I slid him into his jump-up. Almost immediately he started shrieking. His body tensed, teeth clenched in a devilish grimace, fingers working madly, obsessively rubbing together, while he pounded the floor with booming heels. I hadn’t seen this irritable behavior in days and it served as a bad omen.

While sipping my cold coffee on the couch I noticed Calvin still. I called his name to see if he’d react, his back turned to me, slumped in the jumper sucking his thumb, as he often does. No response. So I lifted his face to mine, pried out his thumb to see bluish lips and flushed cheeks on a pasty complexion. As quickly as I could I unbuckled the straps, hoisted him out and over to the couch. Though it began like a partial seizure I knew it was building into a nasty convulsive tonic-clonic.

I grabbed my camera from the coffee table and filmed it, placing my other hand softly, yet firmly, on Calvin’s shoulder as the seizure blazed for three more minutes. The color of life fades sickeningly from his face until he looks like a zombie. His eyes quiver and blink, in what appears as time-lapse, and stare off into nothingness—like hollow orbs—all at the same time. The docs tell me he is unconscious, but I always wonder, especially when I witness the frightened expression on my boy’s sweet little face.

So, eleven days since the last seizures and I can’t really say that the increase in drugs is helping much. These relentless seizures—they just keep on coming no matter what we do. Five years of them. Hundreds. Unfortunately Calvin has to be a guinea pig. We try one drug until we’ve maxed it out and then we try another—sometimes as many as four at a time. We try special, rigorous, exacting diets, and then we try another. Nothing has worked. He’s taken eight different anticonvulsant medications since he was two years old. Who knows what they’ve done to his developing brain? I know in my gut that the drugs are in great part why he can’t walk by himself, though he’s seven years old.

It’s god awful, this epilepsy, and it’s looking more and more like Calvin has been handed a life sentence. But we’re right there with him, hand in hand, all the way.


  1. I definitely feel for you and your son. We have 2 yr old autistic son and thought he was having absence seizures. All docs say otherwise, but still scarey. Will you keep your family and son in our prayers.