Skip to main content

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. 



Comments

Kenneth Lilly said…
I'm so sorry. I know how hard it is to maintain positivity, especially during a season like this. Love to Trevor, you and the whole litter.

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

it ain't sexy livin' on an island...

Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...