“Cause it’s been fear that ties me down to everything
But it’s been love, Your love, that cuts the strings…
You make me want to be brave.”
~ Brave, Nichole Nordeman
In the past few months there’s been concern that Rhema might be having seizures at school.
She suddenly squeezes her eyes tightly shut. She covers her face with her arms as if she cannot tolerate the light. Sometimes she’ll drop and huddle on the floor, immovable. Sometimes, after she’s “snapped out of it”, she becomes upset and overheated and tries to remove her clothes. At school, her teachers call these episodes “breaks.”
With Rhema, it’s just so hard to know sometimes. Brandon and I have always assumed that these episodes were behavioral – just the latest odd thing in a slew of odd things she does. For months we’ve gone back and forth, talking with teachers and the school nurse, talking with the staff at Children’s Hospital, video-tapping the episodes. We’re still not sure.
So we scheduled another 24 hr. ambulatory EEG. Sadly, her last EEG was… messy; her brain spiking on average 40 times a minute.
Yesterday my father-in-law went to the hospital with us and helped me hold Rhema down while she got the leads on. Rhema has had more EEGs than I can count since she was two years old. By now she knows the drill, but it is absolutely terrifying , even painful, to her.
As soon as we enter the room, she is humming nervously and covering her ears.
Asking her to lay still while a stranger messes with her hair, measures and writes all over her head is like asking a teapot of boiling water not to scream. And then we wrap her in sheets and seal her up in a papoose (aka straight jacket.) All she can do is jerk her head back and forth, tears pooling in her huge brown eyes. The cold glue that smells like paint thinner, the texture of the gauze, the loud sound of the suction tool near her ears – it’s a sensory onslaught.
But she handles it well. While her head is being wrapped tighly, she says “Uh oh, uh oh.” She babble-complains, and I kiss her red-hot cheeks. She calms herself with a song of words I’ve never heard.
This afternoon we’ll go back to the hospital. Rhema has been so good. She has not tried to rip the leads off her head even once. She kept the backback with a special recorder on all night long, and she slept peacefully!
I’m just proud of my brave girl.