too good to be true

Yesterday at 7:00 a.m. we packed up the car and embarked on the two and a half hour day trip to see Calvin’s neuro-ophthalmologist in Boston. Calvin spent the first part of the trip screaming and “singing”, which sounds more like a soprano on steroids than anything. When he sings he is so loud we can barely hear ourselves think, and it is nearly impossible to get him to stop. We had a long ride ahead of us.

At one point I noticed a stippling of tiny red dots on Calvin's chin and cheeks—a telltale sign of a virus—accompanied by a runny nose, a patchy red complexion and what I call “stink breath" which is the pungent breath he often has prior to a seizure.

We had forgotten to pack Calvin’s stroller so Michael carried him and held him for the various ophthalmologic tests, during most of which Calvin laughed hysterically—a little too hysterically for my comfort. The first doctor witnessed what I had recently begun noticing which was Calvin’s upward right gaze in tandem with a pronounced jerk-nystagmus. He asked us if Calvin was having absence seizures. I explained that, because of Calvin’s nystagmus, it was difficult to tell and that what we really needed to do was another EEG.

Save for Calvin’s laughing the visit was pretty routine and after two hours we were free to go. Several times on the drive home Calvin’s eyes momentarily fluttered and blinked, once or twice his head or shoulders twitched and few more times he stared up to the right again, his eyes roving and jerking. These behaviors made me very suspicious and fearful of—if not seizures in and of themselves—an impending seizure.

Upon arrival home Calvin wouldn't nap so I put his harness on and we practiced walking. He bounded up the stairs with the agility of Superkid, scooted down them just as well and walked with incredible balance. This kind of stellar performance used to be a bad omen, like the calm before a storm. I remember saying frequently “Calvin’s walking and balance are better than ever” only to witness a bad seizure later that night. His enhanced capabilities were often too good to be true and became more of a foreshadowing than a cause for celebration.

So, just before Calvin’s bath last night, I wrote in my journal about the harbingers of the day and ended with the words “suspect seizure tonight.” About five minutes later my suspicions were confirmed.

Calvin was headed up the stairs for a bath. At the bottom step, he stood erect and still while his face went blank. At that moment I knew something was wrong, so I scooped him up in my arms as he let out a shrill cry. I felt his muscles clench then his body froze rigid like a plank. As I carried Calvin to the couch I yelled for Michael who came immediately. There we helplessly watched him—like countless times before—for two, blue minutes. It had only been ten days since his last seizure.