waiting for the day

For nearly fifteen years I've been dreaming of and waiting for the day when my son could amble around the yard by himself. Since Calvin was about three, he has appeared to be on the verge of walking without me holding his hand, harness, elbow or shirt, or slinging an arm around his neck or waist.

Sadly, just before Calvin took his first steps in earnest when he was two and a half, he was on a pretty high dose of the powerful antiepileptic, Keppra. Judging by the way he walked as if he were drunk and/or aboard a rocking ship, it must have made him dizzy. Poor kid. When I think about the legion of awful drug side effects my tiny boy has endured for so many years, I feel sick.

With time, Calvin's balance has been getting better, but most especially during the pandemic. My guess is the improvement is due to the gradual reduction of his one remaining pharmaceutical, Keppra. Though we ditched it before he turned three, we went back to it when he was six or seven. We've allowed him to gradually outgrow his "therapeutic" dose, and more recently we began reducing it because it doesn't appear to be doing jack shit. His dose (mgs/kg) is now half of what it was years ago. It might be my imagination, but he seems slightly calmer lately. Moreover, he has not had any seizures in twelve days, which is equal to his longest stint since March (though I think he's on his way to having one tonight.)

Getting back to his walking, this is the first summer that I've been able to let him get a distance from me without worrying (too much) that he will fall and hurt himself. I still stay nearby to spot him, especially when he walks on the stone path or in the narrow spaces between the rock borders of the perennial gardens, but the kid is doing decently well balance-wise. And though his gait is wonky as ever, I almost never see him teeter backwards anymore. Unfortunately, I still can't leave him on his own because he's prone to sit on the ground staring at the sun and/or sweeping blades of grass, twigs or bark into his mouth. But I can relax from my usual hypervigilant state for fleeting moments just to pull a few weeds or deadhead some flowers, and for that I am most grateful.

1 comment:

  1. Nice progress this summer! "Mama's" and now going walk about! Good work.