Nothing comes easy for a kid like Schuyler. Few things are given without a price. It’s funny, though. Schuyler lives a life of joy, more than anyone else I’ve ever known in my entire life, certainly much more than me. No one understands better than she does how unfair the universe can be, or how what a cheapskate it can be when it comes to letting kids like her possess the simplest of pleasures without complications. Happiness, with an asterisk. Schuyler clings to her joy, though. She knows the price, and she doesn’t squander it.
Schuyler had a seizure at her birthday party. It was a bad one, judging from the aftereffects, which lasted well into the next day. One minute she was blowing out the candles on her cake, and the next she was in tears, confused at what was going on, tearfully saying she didn’t know why she was crying and couldn’t stop.
I knew why, of course. It’s been a long time since she’s had a real seizure, one that shook her up for so long. But in retrospect, maybe we should have seen it coming. Schuyler was excited in the hours leading up to the party, a kind of fever pitch that grew exponentially. She could barely sit still. That much emotion and that much energy. It was like monster food.
Because I am who I am, it’s tempting to focus on the heartbreak of Schuyler having a bad seizure during her first big party, and her sixteenth birthday party, no less. But that negative narrative wouldn’t make for a very good representation of how her evening went. Yes, Schuyler had a serious episode. She had the makings of a rough night.
But Schuyler had a good time. She cried, but she laughed, too. We spent time away from the party while she tried to pull herself together, but we also drove go carts together. She screamed and howled with laughter as she tore around the track, and took it in stride the one time she crashed, scattering cones like a boss.
I learn from Schuyler and her gigantic good heart. She teaches me every day, and the thing she tries to impart to me most of all is simply to lighten up a little. It’s a hard lesson for me; at times, I feel like my fatherly life’s narrative has been written in worry. But it’s the one lesson she never gets tired of presenting to me.
Maybe one day, I’ll take it to heart.
Me: So, tell everyone about your party. Where was it?
Schuyler: At Amazing Jake’s. There was Golf, rock climbing, go cars, and food like pasta and pizza.
Me: How many people came to your party?
Schuyler: Ten I think. Two from band and three from math at Jasper High School. Also my aunt and cousins, Scotty and Susie.
Me: How did you feel before the party started?
Schuyler: I was happy and excited. When my friends showed up, I feel more excited.
Me: What happened during the party?
Schuyler: I had a seizure after I blew out my candles.
Me: Tell me about that.
Schuyler: It felt weird a little bit. I was crying and it was really hard because I can’t stop. It feel like people were dying in my head. My monster don’t like me.
Me: Were you embarrassed?
Schuyler: A little. (Pause.) You know what, I was a lot.
Me: How did your friends react? Were they nice to you?
Schuyler: They were worried about me. My friends care about me.
Me: Did you feel better after that?
Schuyler: My head bother me the all night long. I was tired and my eyes were red. My face was a little red, too. I sleep a lot the next day.
Me: Did you manage to still have fun?
Schuyler: Hell yeah! (Sorry.)
Me: What was the best part of your party?
Schuyler: Have my friends there to care about me. Also playing games with my friends and family, and go cars and bumping cars. I crash my go car! You thought it was funny.
Me: What would you like to tell people about your polymicrogyria and your seizures?
Schuyler: To please help me and get this thing in my head!
Me: What’s it like?
Schuyler: A war. Like two kingdoms fighting on an island.
Me: Turning sixteen is a big deal, you know. What new thing do you want to do this year?
Schuyler: Maybe go with a boy.
Me: I think sixteen is going to be a great year for you. What do you think?
Schuyler: It is hard to be a grown up.
Me: Yeah. It really is.
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