I was composing a cute anecdote about our drawing lesson today. I purchased Mona Brooke's Drawing With Children over the summer and just implemented our first lesson today. He LOVED it. He made me laugh when, at one point, he turned to me and said "I'm not Bob Ross". It was post worthy.
I was almost done with my thread when the seizure struck. It wasn't obvious at first that it was going to be a big one. Then he started drooling. Profusely. And moving in bizarre, robotic, clearly neurological ways. When his body wasn't moving up and down, side to side, or twisting around, it was shaking violently. The front of his shirt was soaked through as the drool just kept running.
After his last large seizure we've started accessorizing with a stopwatch in lieu of a necklace. When I realized this wasn't going to self resolve quickly, I pressed the start button.
At the minute mark I called for Toby. I didn't say why, but I didn't need to. He knew to bring me the Diastat. For all the ways he annoys and aggravates me, in these crisis moments I have watched him grow the heart and mind of a hero. He was a true hero for me today.
He brought the Diastat case to me, on which I've taped a small bottle of Frankincense. He'd already uncapped the essential oil and I immediately pushed it under Trevor's nose. After a recent big seizure, I was reminded that some people use Frank as a rescue med with success. My thought is to start there in hopes of breaking the seizure before the 5 minute mark. I'm a little terrified of giving him Diastat since we've never used it before and therefore I have no idea how it's going to effect him.
Neither Toby or I are sure if the Frankincense worked or the seizure was going to end when it did, but we both feel like as soon as it was under his nose the seizure began relenting. Thank God.
When we were sure it was over, we let him take a shower. That's his comfort of choice after these large seizures. Toby, still in hero mode, took care of his brother for me while I wept in the kitchen. I didn't want to call Jonathan, but he texted me right then. And he's my best friend. I had to persuade him not to come home.
I've been in communication with our neurologist. An MRI is being booked. Trevor has been tired and head-ache-y since. It's only slightly less heart wrenching to help him through the aftermath. He keeps saying, "I just have a head ache and I don't know why."
This is real. This is terrifying. This is overwhelming. This is dark and heavy. This is life with catastrophic epilepsy.
Comments
So few people grasp the magnitude of that word.
When is the MRI?
No date on the MRI yet. Hope to have it schedule by the end of next week.