Elizabeth has been unique since well before she was born, surviving the loss of her twin when my water broke at only 10 weeks gestation during a flight between Switzerland and the US (the longest twelve hours of my life.)
Sometimes when life gets really difficult, when she’s having a “Bad Brain Day,” as we call it, to externalize her inability to think clearly or control her emotions, I hug her and tell her how thrilled we are that she’s here. We didn’t think we’d get any days with her at all. So even hard ones, where homework seems impossible, or, like a few weeks ago, when she had a seizure and threw up before the entire school at an assembly, are still good days. Any day with her in it is a good day.
We learned a few days ago that the manufacturer of the glue that holds on the electrodes during an EEG test wanted to use Elizabeth’s video as an educational tool for other parents. They had discovered, as we had, that there wasn’t a lot of footage of this, clear explanations about what happens when your child has to be wired for days at a time to monitor brain activity.
I can’t tell you how glad I am to have had the equipment I had that day to shoot the high definition video and stills to document our experience so that other parents would get a chance to calm their fears and those of their children. (And that I could keep from shaking too much as I hand-held the camera while she went through this.)
The video was reworked with an amazing song by Jonny Boston licensed through Triple Scoop Music. The company will be using it in several countries, and it is already up on their web site. I updated Elizabeth’s story, so others would have an idea of how she is doing. I can’t imagine living my life like she does–never knowing when or where or how a seizure will strike, what will be happening when she comes out of it, or who might have seen. She’s eight now. It’s a lot to manage. But she does great.
Here’s the newly spit-shined video. We’re going to put up another one soon–something FUN. She saw lots of kids on Amazon were upset that they couldn’t get their spinning plate juggling kits to spin, so we recorded her showing them how to do it properly (the kit took some modifications–all her ideas.) That’s my girl.