It’s 3am and I can’t sleep. Since Laycie’s last seizures, I’ve been up almost nightly. I listen for her breathing. I watch for her movements. I can’t rest.
Yes, I’m probably driving myself crazy… but she is my baby girl and my life wouldn’t be the same without her in it. Losing a couple weeks worth of sleep here and there is worth it. Making sure she’s okay and not alone in a seizure is worth it.
Her EEG is scheduled for Friday night. It’s a 23 hour study. I pray she has activity that shows so that it helps find answers. After almost 11 years of this, you would think they’d already have answers. But still we wait for more.
I don’t know what the next steps are. Truth is, most people in our family outgrow this. Truth is, my sweet girl may not.
I’m not sure what happens for her teen years… and then adulthood… driving a car, having a family, living on her own. Will she even be able to do those things?
I know people who have died from SUDEP. It’s heartbreaking. It’s surreal. I can’t even begin to explain.
Truth is, this could take her away from me and that scares me every day.
In a few weeks, I hope she will again have control… and then I will rest. But for now, I watch her and I wait and I hope that she rests with no seizures through the night. I’ll nap tomorrow when I know, for the day, she’s okay.
Until next time…
Dana
