What I Want

Tomorrow is Maeve's sleep-deprived EEG. Mike is downstairs with her right now watching the Batman cartoons from the 1990s--her favorites. I'm upstairs, supposed to be asleep because I take the morning shift. Like that's going to happen (the sleeping). She has to be up at 5 a.m. and kept awake until the appointment. Which is at 10. Think of me (and her) tomorrow morning. At least the drive to the hospital is about 5 minutes long. Not really long enough to really fall asleep. I think we'll make cookies after taking Sophia to school. Take a walk if the weather doesn't suck. Play mancala game after mancala game.

What do I want? I want, obviously, for the EEG to be as inconclusive as my two were in 1999. I want the technician to say to me off-handedly afterward that nothing seemed amiss. Like the technician said to me in 1999 with the caveat that the neurologist would have to say for sure ("But nothing showed up," he shrugged).

More than that, I want this pediatric neurologist to have more to say than the on-call neurologist in the ER did. Unfortunately, I have to sit on my hands until April 1 when we see her. In the ER, the neurologist shrugged a lot. The young DO resident mentioned febrile seizures without fever coming first, but the neurologist said it was all a mystery until the EEG and MRI. She gave me nothing to go on.

The phone call to Neurology later that evening gave me something to cling to, but I want to take that resident to coffee and have him explain it all to me. My neighbor the physical therapist told me how relieved she was when she read my email that Maeve had spiked a fever. My dad blew it off when my mom told him. Oh sure, fever hits the brain first. The friends with children who have had them have mentioned that they sometimes didn't notice the fever until after the seizure--but 3 hours after?

I really need someone to hand me a medical textbook with proof. I guess I've been in Missouri (the show-me state) too long. I am going to hold my breath for the rest of my life together with Maeve without proof.

Then again, maybe I won't. Maybe it will be enough to just not know--to have the carrot of febrile seizures held in front of me and the stick of genetics and doom behind me. Maybe it will be enough to just hear that pediatric neurologist say probably. Because that's probably the answer, unless Maeve runs out and gets another fever to test the theory--only 30% of children who have a febrile seizure ever have another, and hers are so late-onset that it's unlikely. It will probably remain a probable mystery. Unless she has one unprovoked.

All I know for sure is that 2 weeks ago, I thought I was going to show up at the ER after the ambulance and find that she'd slipped into a coma. I thought she was dying. It's been 2 weeks of no repeat (the second milestone I was given by the lackadaisical neurologist in the ER) and I'm feeling stronger about our chances. Which makes me want to run, run, run from this EEG tomorrow. Don't try to induce a seizure in my child to prove the worst case scenario to me. Leave me with the hope that it's benign.

What I want is to be able to stand inside her childhood again instead of viewing it through a window.