and just like that

And just like that, we're back to survival mode.

Yesterday was a hard, hard day.

His rescue meds required a higher dose than normal to break the seizures.

We're not sure why. We're never sure why. The questions from neurology are always the same; as are the responses.

Is he sick?

I don't think so.

Tired.

Story of his life.

Any other triggers you can think of?

I don't know. How can I possibly know? If only we knew. His own broken body and brain are his trigger.

I never say that out loud, but its frustration rings wildly in my heart.

Jonathan held me and said it feels like we're watching him die over and over again. Every seizure is watching him walk to the brink. By now we've watched him die a hundred times. Except he doesn't. Except he is. His words are movingly poignant. I hug him tighter because there is a deep forging of hearts that walk through suffering and sorrow together.

Yesterday was a hard, hard day.

This morning has been differently hard. The rescue meds may have suppressed the seizures, but at a cost. The payment extracted is that of behavioral outbursts which are difficult to manage. He's restless, unsettled. He's been weeping all morning over nothing and everything. He's angry because...well, just because.

I'm sitting on the couch trying to muster the strength to make it through another hard, hard day.

I notice him storm in the room and back out again, iPad under his arm.

Shortly, my cell phone dings. 

He'd sent me a text...

Oh, my heart.