Written at 9 AM today, but I could not post at the hospital:
One of the hardest parts of being here is listening to the sound of other children crying. Last night there was a boy, not more than two, and he was up all night. Fitful crying, wailing really, with a tinge of pain. Maternal and paternal consoling could place no spell on him last night. And I think of the many days and nights he’s been here, how in 2009 I nearly lost my sanity having to endure that fitfulness with Caleb for a single night. Can there be too much prayer for this boy? Certainly not.
Caleb’s biggest test today is not the EEG, but the neuropsych testing. I’ve been preparing him for what I call “hospital school” to get him to the top of his game. We read several books together, played games, and told jokes to sharpen him up. I dressed him and brushed his teeth. I gave him a pep talk. It’s like I’m preparing him for a competition.
I guess I’m more anxious about the results today than I was yesterday. Just talking to the doctor and feeling like this seizure activity may be getting under control, it makes me nervous. My mind’s like, “Amazing! The Landau-Kleffner is under control. Praise God!” But it’s also like, “Caleb’s still struggling with speech and academics. We’ve been in therapies for years. What else can we do?”
It’s hard when the world’s expectations weigh on my evaluation of Caleb’s progress. Words like typical, normal and average shouldn’t give me the sense of relief they do. Why should any parent have to evaluate their child? I don’t want to evaluate and assume and predict limitations. Caleb’s five. I just want to love him.
As we await our doctor face-to-face time, I work to find peace in the blessings we’ve received in the last couple years.
(We are home now, but I’ll post about the results tomorrow because, frankly, I’m tired.)