Hopeful Still

This morning Michael had a seizure while asleep-one of the tonics that lasts a couple of minutes. I was alerted by some loud thumping which turned out to be one of his arms smashing the wall next to his bed. Had I not heard that, I'm pretty confident Katie would have alerted me as she was almost to my bedroom as I made my way toward Mike's room. It isn't pretty watching a seizure---hoping it ends soon-swiping the magnet over the VNS which seems pretty useless but nonetheless is part of the routine. Also part of the routine is sitting beside him in bed----waiting for the stiffening motions to subside-then waiting for the heart rate and breathing to decrease to some degree of normalcy---waiting till he can groggily respond to his name. Satisfied with opened eyes that briefly meet my own and a grunt that indicates he hears me, I leave him with Katie beside him, hoping he can now sleep peacefully.

Half an hour later I return to the room with morning meds in hand. Michael wakes to the sound of his name. I ask him how he feels. "Fine". He takes his meds, climbs out of bed for a brief trip to the bathroom. I let him know he's had a seizure. His general grogginess or maybe a headache would have alerted him to that fact eventually. I marvel at how he is amazingly functional just 30 minutes after  misfiring neurons took possession of his brain. Amazing. He truly is amazing.

We have settled into this new pattern which actually was the seizure pattern prior to the hellish 15 months when monthly early AM seizures during sleep stopped and were replaced with  tonic seizures occurring multiple times throughout the day. Blessedly, that pattern stopped in February of last year and now it appears the old is new---1-2 lengthy AM seizures a month. It sure beats the traumatic falls, sutures, hospitalizations and emergency calls made necessary when the seizures simply wouldn't cease no matter the emergency drug. Yes...it's better than when every day was hell on earth. But it's not acceptable.

Not Another Moment Lost To Seizures... I believe that's the motto of the Epilepsy Foundation of America. I would add Or The Drugs Used To Treat Them. All of this---this morning- and the past twenty-eight years lead to my current rant. Why the hell can't some brilliant neuroscientist(s) figure out why my son's brain and those of so many others are besieged by neurons gone awry? Why can't someone figure out why one medication or a cocktail of anti-seizure meds are ineffective in controlling 30 % of those afflicted, and I do mean afflicted, with epilepsy?  Why?

I have hoped for twenty-eight years that the mystery of one of the many diseases/conditions that originate in the brain would be solved and that such a breakthrough might positively impact some other neurological condition. I have hoped...and hoped...and hoped. And I will continue to do so of course. I will continue to hope that in Michael's lifetime there is a treatment that does more good than harm, or better yet, a cure. Epilepsy is complicated for sure and in many instances, catastrophic. It takes away moments and hours and weeks, months and years. It takes away lives. But it can't take away spirit and resolve or hope.

It can't take away my hope.