Last year, the amazing and agreeable walking I had witnessed Calvin do was likely because of the impending seizure he was about to have the next morning—incredible balance and coordination being common harbingers of his seizures—like the calm before the storm. This time things were different. Calvin’s balance ambling down the paved path was not good—often careening to one side as I pulled weight against him to keep him upright. He balked at the task at first, but then seemed to understand our goal and kept on going. The big difference this time was Calvin’s nineteen-day seizure-free stint, breaking a two year old record, which might have accounted for his good behavior and willingness, the large doses of three anticonvulsant drugs accounting for his poor balance.
Though later, when Michael and I took him to the grocery store, I began to fear a looming seizure again, just like last year. Under banks of florescent lights Calvin instantly became a raving loony, laughing and screaming hysterically in the cart, kicking and flailing like a madman. Trying to soothe him I crouched down low and wrapped my arms around him as he giggled wildly and yanked my hair. His face had begun to flush. I knew I needed to get him the heck out of there, and so Michael finished the shopping while I walked Calvin outside, gripping his hand tightly across the parking lot to the car.
At bathtime and dinnertime Calvin was the same. I wondered if the stimulating visit to the grocery store had caused something in his volatile brain to snap, like tectonic plates that build up massive pressure until it’s too much and the big quake must joltingly release its wrath.
I sit with the baby monitor on my desk listening, waiting for the shit to hit the fan. But it doesn’t. At least not yet.
Hi Christy, Wow, what a journey you are on. Calvin is one lucky guy to have such an amazing and dedicated mom. I'm glad we've reconnected and I've had a chance to learn your story. Great job on the blog - I learned so much about a disease I know very little about. I donated to CURE and will be sending prayers and good thoughts your way - for your fears for today and for the journey ahead.ReplyDelete
Erika Parker Price