The Price of Happiness
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.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.
Share this:
About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
Hi Rob, I read your writing about Schuyler and her monster and I get a lump in my throat. Thank you for sharing your journey.
Hell yeah!
Happy (belated) Sweet 16, Schuyler!
Love your writing Rob – what a wonderful relationship you two have – it’s so lovely makes me feel warm and fuzzy. Thanks to you and Schuyler.
Hi Rob. This isn’t a comment on your post, as such. More like a question and a request for your thoughts on something. When I first started reading your site, many of your posts championed inclusion in school for Schuyler (and, indeed, all of our special needs kids). I have noticed in your recent posts that it seems as though much of Schuyler’s core education is now taking place in a Special Education class. I’m curious about the change. How has Schuyler taken to these classes and does she miss having most of her classes with neuro-typical kids? Is this a change that you and Julie sought out or fought? As a parent with a daughter who is about 5 years behind Schuyler, I’m curious about how the change happened and how it has turned out. Thank you in advance and thank you for all your insightful posts.
It’s… tricky. The best answer I can give is that this represents a point of disagreement with the school district, and it’s something we’ve pushed back against but with only partial success. The shift began in middle school, but it’s really only in the past two years that she’s been in this more segregated situation. To be honest, our inability to successfully have Schuyler placed in a more inclusive classroom setting is what I consider to be my most egregious failure as a parent advocate, and it’s something that we can hopefully get more traction on for her final two years of high school next year when she changes campuses.
I love your Schuyler after reading your book. My Great grandson doesn’t speak, he is approaching 3yrs, very weak muscles, walked at two, with therapy. Happiest boy I ever saw. not good eye contact. Scary! I do not know if they have a diagnosis yet, thanks so much for sharing. I am giving Schuyler’s book to them next time I see them. Hope momma can handle reading it. god bless you and your love ones.