A Good Day, with an Asterisk

Yesterday, Schuyler had a very good day.

Mostly.

After a semester of hard work, Schuyler's beginning band class held an in-school recital; in her case, the beginner horns and percussion. Schuyler has been excited but anxious about this performance. I'm not sure she's completely accepted that she was really going to be able to be a member of something like a band program. She's been a little hesitant, as if someone was going to take this away from her. Being able to participate completely and meaningfully in an actual performance was exactly the thing to convince her that this is all for real, and hers if she wants it.

So it was a big deal, this performance.

Still, when I walked into the school, I wasn't expecting to see two of our very best friends, Schuyler's godparents, waiting inside. I actually did an old movie-style double-take when I saw them. Their attendance was no small thing; they live about six hours away, after all. Jim and Kim have been huge supporters of Schuyler's all along. Jim is an old friend from high school who is now an exceptionally talented band director; his wife directs the color guard at their school, the girls whom Schuyler still refers to as her "sisters". When they learned that Schuyler had a rough week with at least one seizure and probably more, and knowing how important this first performance was to her, they simply piled into their car and drove to Dallas.

Just like that.

Schuyler loves Jim and Kim without hesitation or limits. When she saw them, she waved and smiled a smile that was pretty much in evidence throughout the performance. She ended up doing very well on the recital, and loved every minute of it.

Don't believe me? See for yourself:



After the performance, we scarfed up some free cookies and spent some time visiting with to Schuyler's band director. She's an overbeliever; we like her very much. Afterwards we killed some time until Julie got off work and then headed out for dinner.

It was then, in the car, that Schuyler began to unravel.

Julie noticed it first. Schuyler was trying to tell her something, but her speech was suddenly very hard to understand, almost like a baby babbling. As we parked the car, I turned and saw Schuyler leaning lethargically against the door, her eyes distant and her mouth open slightly. I said her name a few times, and she snapped back. She was irritable and disoriented for maybe a minute and remained a little quiet and distant at dinner.

She came back to us, though. For the most part.

We were all a little shaken, as this was the closest any of us had really come to actually witnessing one of Schuyler's absence seizures. But we took our cues from Schuyler, who seemed determined to have a fun evening despite her lingering disorientation and fatigue.

Schuyler had a good day, mostly. At its conclusion, she decided that it should be a good day to the very end, monster or no. We're okay with that decision.