At a Loss

I don't know exactly how to describe the last several months. I'm still a little stunned really, that Michael's seizures have spun so out of control and that all the tweaking of meds up and down and CBD adjustments have given us just a few decent days couched by days with horrific clusters, falls and near falls, and extended seizures. I am terrified that we can't seem to get this beast under control- that our original projection of returning to our imperfect, though blissfully better, normal within a few weeks of the November 3rd  fall has stretched into the final week of February.

I am convinced we will figure out a solution to this. I am most grateful I can even think that based on our past experience. We are working with an excellent neurology team and though Michael has been on over two dozen meds during the past 26 years there are still a few we haven't tried. I'm not adverse to trying a new drug. My goal has never been to be pharmacy free, rather it is to be seizure free (at least while awake) with a minimum of medication side effects.

Michael is weary of seizures, of having us too close by to ensure against more harmful falls, and probably just weary of us in general. We are weary too---of constant vigilance and reminders, of days where resentment toward us for trying to keep him safe and get him returned to baseline is the mood of the day, of watching his body writhe in the throes of an extended seizure or of seeing the aftermath of a catastrophic fall which we damn well know will land us in an Emergency Room and probably result in a hospital stay. Yes. We are all weary including my mother who has been here every step of the way since November 4th. She has long since stopped asking "how do you do it?" or remarking " I couldn't do it".  She accepts we do it because that's what we have to do. It is what it is. We aren't heroic, not better or worse than any other parents. We just want the best for our children. Period.

I lost it a little bit in Michael's hospital room this morning. I was totally discouraged by Barry's report of multiple seizures while awake last night. I rushed him out of the room and sat in a dark corner looking at our son and holding back the tears. Ralph, the EEG tech who we've known for years, came in the room, sat in the chair across from me and acknowledged the EEG wasn't looking any better. His empathy enveloped me and tears fell. He softly said he'd be back later. I allowed myself the luxury of a simple  cry. Then, our day shift nurse came in. She recognized us from our stay in December. "So- have things gotten any better since December?" I tried to reply but it got lost as I choked back tears. Shorty after that Michael woke up. "It'll be OK Mom".

It'll be OK. I'll hang on to that.