We took Schuyler to a birthday party for one of her little cyborg classmates today. When we got to the restaurant where it was being held (a pizza place called Nick 'n Willy's, but which I can't help but call Naked Willies because I gotta be me), we found the place packed with kids, decorating their little blue aprons with markers and pounding out little blobs of what I hope was fake pizza dough. A few of them were from the Box Class, but mostly they were a bunch of regular, jabbery little kids. (In the Lingo of the Broken, they were what would be referred to as "Neuro-typical". Remember that and impress your friends at your next company picnic.)
The birthday boy himself is one of the more severely affected kids in the class. He's confined to a wheelchair and is only slightly ambulatory. (More lingo; "ambulatory" means you can get around under your own physical control.) I believe he works his Big Box of Words with his head, although I've never actually seen him in action.
Here's why I love Schuyler so much, and why she's a better person than both you and me. When she saw him, she let out a squeal and ran over and kissed him. (One more reason being in a wheelchair is tough: you can't get away from Schuyler's slobbery kisses.)
Schuyler doesn't judge and she doesn't hesitate to love and accept. Every day, in about a hundred different ways, I am so proud of her that my heart swells and breaks a little. She loves the whole world in a way that it will never ever love her back, and that says as much about this grand rough world as it does about her.
She spent the party seated next to her best friend in the world, a little girl named Sara (I've mentioned her before) who is similar in language skills and mobility to Schuyler. I sat and watched them for the entire party, and took about seventy photos of them together (again, I wish I could share them, because they are super cute), and here's what I can tell you about Schuyler and her best friend. They love to laugh. They both got dealt a shit hand by God, and their birthday friend got an even worse hand, and yet for the duration of that party, the three of them laughed and played as hard as a six year-old can laugh and play. The "neuro-typical" kids, for all their words and mobility, couldn't match the three broken box kids in enthusiasm or in sucking every bit of joy out of every minute they had.
Schuyler's monster has taught her a lot of hard lessons, and the hardest ones are probably ahead of her. But sometimes, on days like this when she's laughing with her broken but happy little friends or running and stomping messily in the rain puddles outside, I can see that her monster is teaching her to live her life turned up to eleven. And perhaps she's teaching me the same thing.
Incidentally, as I write this, we're sitting around watching cartoons. The one that's on right now centers around the characters burping. There's a lot of burping going on, as you might imagine, and we're both laughing like monkeys. Schuyler thinks burps are funny, which of course they are, and she keeps fake burping and then making me do it for real. I'm starting to feel a little queasy, to be honest. Performance art is difficult work.
One day, I'll teach her how to make herself burp. It'll be my legacy.
13 comments:
burps are indeed funny. and as always, your love for schuyler shines through in writing.
i love your kid. press that button on the BBoW for me.
cg
by the way, you suck. just to leave some stupid comments on your "blog" meh meh meh fancy pants asshole, I had to sign up for a fucking blogger account.
I used to be honest and sign in as me with my url and my name. but meh meh meh. fuck the assmonkeys who pushed you to the no-anonymous-postings positions. If I could, I'd kick them in the teeth.
now I have a fucking regular journal, a fucking blogger journal, a my space journal and a fucking livejournal.
my head is so gonna explode. pass the gin and tonic now. please.
Rob -
Life turned up to eleven is the only way to go. Good thing Schuyler has this figured out early in life, and is teaching you this valuable lesson. My kids did it for me too. :>
Hmm, yes, burps are funny. Teach her the great skill of armpit farting and you won't need to concern yourself with gastroinestinal side effects of the air-swallowing method.
Oho! It's true - we need a blogger account now to comment. I feel as though I'm part of an exclusive (only a billionty members!) club here.
Yeah, sorry about that. I was spending way too much time sorting through some pretty vile anonymous comments.
i understand. i just thought i'd be a whiner. wah wah wah. that's me.
you gotta do what you gotta do -- assmonkey filters are important.
Rob - totally understandable. If someone wants to leave a vile message they should at least have the stones to sign their name to them. Everyone, no matter how misguided, has a right to their own opinion. :>
Besides, internet titans can do whatever they want with their blogs!
Once again, reading your posts wants to make me cry....do you care if I put you in my linklist??
Almost makes her monster look like a gift, because she's able to see past how they're broken, and just see's other kids, like her.
I know she's got her shit to deal with, but in little ways, that shit is helping her to be a strong kid with a good heart.
Camp Lazlo! You must have been watching Camp Lazlo. We enjoy that, too. My girls and I are particularly fond of Raj, the elephant. While we enjoyed the burping episode, our favorite is the camp store one where they have the sock puppet therapy session. Also, my youngest enjoyed the one where the duck had a doll named Veronica.
We would be sad without Cartoon Network.
That's exactly what we were watching. Man, I am so busted with the kids' TV.
i'm jealous, i don't know how to burp on command and it drives me nutty! that and doing the loud whistle through the teeth are my goals in life. =D
I think adults can learn a lot from any children, healthy or sick, neuro-typical or not so much. They appreciate life in a way that I often forget to.
I'm so glad that you share Schuyler's experiences in the way you do.
Rob & Schuyler--My husband is trying to teach our dog to burp on command. She's inconsistent, but it's really funny to see the expectant look on her face right after she does it, like she's thinking: "Was that good?" Maybe you could teach Lulu and Petey.
Post a Comment