Wednesday, February 7, 2018

On the Edge of...

This month marks a year that seizures haven't intruded upon nearly all aspects of our lives. It marks well over a year that we haven't placed a 9-1-1 call. It marks a little less than a year that the "edgy" feeling when Michael's in the shower, on a neighborhood walk with Katie, or climbing the multiple cement stairs on campus has, for the most part, abated. It really has been a very good year.

Michael was napping on the couch today as he does on most days. He had a couple of brief tonic seizures which is par for the course---he has them each and every time he sleeps. Dammit. I said, certainly not unusual. We simply don't get excited about them anymore. Then---a more familiar and fearsome guttural noise and a more lengthy tonic seizure-perhaps a minute, maybe a little longer. There I was as I have been so many times. "Michael, Michael---please stop". (after all these years I still think that will somehow turn the switch? Of course not-but it's so automatic. Wishful, spoken plea. ) DID stop. And he did have a relatively peaceful sleep for a very brief period afterwards. Then, he was up and about walking behind my chair, conversing casually and I told him forcefully enough to surprise myself, to "PLEASE sit down".

When Michael ended up intubated and in the ICU in August of 2016 for the seizure that wouldn't stop no matter WHAT, the afternoon nap and seizures were much the same as today. Except today WAS different. It wasn't going south in the way it had THAT day.

Since Barry was home and all seem settled down I went to Vons's. I bought some groceries. And all the while I was going up and down aisles I was suppressing the urge to vomit. My stomach was in knots. My heart, as the saying goes, was in my throat. The aftermath, I suppose, of the adrenaline rush and  the pure and visceral fear we could end up in that very bad situation again. The reality is-we didn't today. But our reality is that we COULD.

When I arrived home all was well. Michael-an hour post seizure, was talkative and inquisitive-oddly enough, about my blog. I resolved that I won't let that one August day take anymore of today's joy away, or tomorrow's, or the day after that...

Promise to self.