december has not been kind

December has not been kind to Trevor's body. 

About nine months ago we began implementing a modified version of The Nemechek Protocol . While we were not terribly optimistic, the more we read, the more we felt it was worth a trial. We have been surprised to watch as Trevor's seizures slowly responded in a positive direction. Last November he had over 100 seizure events; this, his seizures tallied in the single digits. 

And then came December. Now our hearts begin the difficult process of navigating the questions and pain each additional seizure brings. Was this simply another honeymoon period? 

Each seizure event rends a little more of my soul. My silly soul who allowed herself to begin to hope too deeply yet again. After eleven years you'd think I'd have erected a stronger safeguard. I feel very much, at times, like a tattered, shredded cloth flapping, whipping even to the point I fear coming completely undone, in the winds of this storm that is catastrophic epilepsy. 

Every seizure is a medical crisis. We live beside chronic medical crisis. For most, a seizure event would mean rushing to the ER. Our family lives many ER days in our own home. 

A horrible seizure attacked him around 9 pm the other night. For a moment I stood simply transfixed by my family. My oldest son raced to get the rescue meds and pulse ox, which he handed to me. My daughter applied frankincense to his toes. Jonathan called his name over and over and held him as safely as possible. There is a surrealness to watching children, your own children, responding to a medical crisis with the same speed and authority you've witnessed in a hospital setting, by medical professionals. This seizure distorted his face and body. Torso, head, neck, shoulders, all craning to the right. So far to the right, with such force, that I thought surely he was going to tear organs or muscles or tendons. For two minutes we were like this. Trevor's body craning, the rest of us hovering around him, caring for him, calling his name, trying to comfort if he could hear us. We were medical interventionists, responding to a medical crisis. 

It's hard to transfer the enormity and saturation of the suffering we live beside daily and how it shapes every fiber of our beings. I try to dwell on the gifts that this suffering brings, and there are gifts. It's just that at times the gifts are drenched in tears.