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Life has been chaotic. There is a great deal of change
happening in our lives, which has me exceptionally overwhelmed and sad
and—really—running a whole gamut of emotions. But those things are outside of
Zane, who has his difficulties, too.
The seizures are on the increase. A couple of weeks ago, I
noticed that they began making their appearance at least once a day, where as before they were happening maybe once a week. I called
the neurologist who upped Zane’s dosage of Keppra. “Give it 10-14 days,” I was
told. We’re on day eight right now, but there is no improvement. Not only have
the seizures refused to stop, but they have become different. More concerning.
Before, they were myoclonic jerks. Now they seem to involve his whole body, and
Zane becomes noticeably disturbed by them—puckering up as if he’s going to cry,
a look of utter panic splaying itself on his beautiful face. By Thursday, I will
call the neurologist again. What I don’t want to hear is the need for an
MRI—particularly because of the change in seizures.
So, in the midst of all the stress we’re under, I’ve been
trying to find quiet times for the three of us. This weekend—and again today—we
went up to the college and flew our new kite. We had little success keeping it
up the first time we were out. But today, it soared. Zane camped out in his
wheelchair under a tree, while Justin and I took turns guiding the kite through
a sky of cumulous clouds. It was a great way to check out—if only for a short
time.
