Sobbing, I worry, not so much anymore about the widening gap between what is and what could have been, but of the electrical storms that race through my boy’s brain and body and of the drugs that do the same.

I used to fret about his failure to thrive, his relative blindness, his flaccid tone, his missing white matter, his reflux, his colic, his inability to calm.

Then my angst turned to his protracted development, his hypothyroidism, his trouble rolling over and holding his head up, the fact that he couldn’t crawl or walk or talk by the age of two.

But now, and since then, the weight my psyche bears is centered in the seizures and in the drugs meant to thwart them. Because it’s not as simple as one might expect. The seizures loom around every corner. The drugs change him, make him hyper or listless, manic or zombie, hungry or indifferent, constipated or loose. They make him dizzy and weak and restless and irritable and headachy and probably nauseous. Take them away and he’s a different kid. Take them away and he suffers withdrawal. Take them away and he seizes. Take them away and he loses skills he worked for months to achieve.

Sobbing, I worry constantly over my nine-year-old boy who is wordless and weak, imbalanced and precarious, wants something but can’t say what, in pain and discomfort but can’t tell us why, can only cry or whine while we search frantically for what hurts.

Sobbing, I wonder how things can go on like this. Sobbing, I worry, and though I wish things were different and I wonder what happened, I try not to ask, why me?

photo by Michael Kolster


  1. I am so sorry Christy, I just wish there was something I could do, wish this never exsisted.

  2. I'm just so very sorry for all of you. Hang in there.

  3. It isn't fair but Calvin is lucky to have a mother like you. Empathy is painful.

  4. Peace to you - even if it's only possible in small doses and windows of time.