A Bad Day

A bad day after two months of good ones is especially hard to take. Hell, this wouldn't have even been considered a bad day by the standards of the old pre-seizure-free baseline. And I know that, but I think I struggle more with the what the event could potentially represent for all the tomorrows.

Cyrus had three seizures this evening. At least we think he did - we're only sure about one of them. These new seizures are subtle - he goes quiet and still, which is what helped me to even notice because he's never still. And then, when you look at him closely he's just slightly shaking. You can see it in his arms and head - just a slight tremor that you would totally miss if you weren't looking for it.  Which makes me also wonder how many of these events we've missed. I don't think it could have been too many before yesterday because after the seizure he's been fussy and sleepy.

And that's what gets me. Why I feel tense and tight and don't really want to do anything more than cry at the moment.  After a seizure he's confused and disoriented. The seizures are bad enough - but I really don't want him to lose anything that he has gained. And he has gained so much in so short a time. I don't want to watch it fade away and I'm terrified that's exactly what is going to happen.

Worse, I go back to work in just a few days and won't even be here to comfort him when nothing makes sense.

I'm trying to rationalize these feelings away even though I know that's not healthy nor helpful. It's just I understand Cyrus's disorder. I know how it works and while I knew he would most likely start to have cluster seizures again, I hoped (and still do) that that day would stay far far away in some distant future. I want that moment where I'm more surprised that he's had a seizure than not. I want it to stay.

I hate that I'm putting this up on the coattails of such a positive update, and I sincerely hope that my fears and pessimism at this potential trend is just a bad day and, in the end, unjustified. That it will be another five days or another fifty before there's another seizure. I just had to write it all out - how else will I sleep with all these unprocessed fears eating away at me?

Cyrus emotes in pulses at times with both crying and smiling - don't know why,

but I find it amusing. It's probably a sign of a neurological problem or processing

delay, but we already knew that so.... I'm going to continue to find it amusing.