December 21, 2015


Today is Schuyler's sixteenth birthday. I'm trying to wrap my brain around that, but it's daunting. My little girl is sixteen. Yeah, no, I'm still working on that.

So this is Schuyler at sixteen. She loves music, although most of what she listens to is a mystery to me now. Between what she picks up from her friends at school and her Teen Mix list on Spotify, she'd might as well be receiving transmissions from space as far as I'm concerned. I realize this puts me squarely in the center of curmudgeonly old fart territory, which is fine. Just keep off my goddamn lawn, thanks.

Schuyler occasionally mentions driving, although she doesn't push it too hard. I think she understands that for a number of reasons, including the reality of her past and also very occasionally present seizures, she's not ready. She might be one day, but not today, and not soon. She gets this, and she's not in a hurry to get started.

Like any sixteen year-old, Schuyler is working out who she is, at her own pace. She's experimenting with her look, with her hair color and make-up and other things that are age appropriate. (Her latest thing is asking to shave the sides of her head, which is getting a chilly parental reception; I wouldn't expect that particular look to make its debut any time soon.) She's become a pretty dedicated hat wearer, and complains almost daily about how she's not allowed to wear them to school. She wears her Polymicrogyria Awareness pin on her favorite hat, and she kisses me and says thank you every time she sees me wearing mine, which is pretty much every day.

Schuyler hasn't had a first date yet, although we encourage her as much as we possibly can. She's shy, something she comes by honestly, and she doesn't even remotely understand the rituals of teen community. I'm not sure anyone truly does, but Schuyler REALLY doesn't get it.

People like to make the same dumb jokes about dad not being ready for his little girl to date. And that's fine, because that's our societal narrative. But if I could have any wish for my daughter now, it would probably be for her to find someone who gets her and who wants to unravel the mystery of Schuyler. At sixteen, it doesn't feel like this is imminent, but you just never know, I suppose.

Schuyler is building a peer group, maybe for the first time. It's almost exclusively special needs kids like herself, and she's learning to navigate everyone's differences the same as the rest of us. It's tempting to imagine kids with varied disabilities coming together as a group naturally, and in some ways that's exactly what happens. Outsiders find their own. But there are bumps in the road, and she's learning to deal with those. I think she's doing pretty well.

Schuyler at sixteen is a girl who lives behind electronic screens, which is not particularly unusual for a girl her age. I sometimes worry about that, but those screens are her path to a larger world, for assistive speech tech and social media and direct communication through texting. I'll accept excessive Netflix as the price we're willing to pay for that.

At sixteen, Schuyler loves all things Star Wars. She likes manga and anime (I'm assured that these are different things) and putting on headphones to sing along to her music without reservation, often without awareness of how loudly she's belting it out. Unlike her earlier years, however, she doesn't particularly care when you point it out to her. Schuyler's got to sing. Everyone else needs to deal with that.

She still giggles when she sees a boy she likes. She epitomizes uncool in those moments.

She asks a lot of questions, even though I tell her she has to pay me a dollar if she asks ones I've already answered. (She's running up a tab.)

Schuyler has declared herself an agnostic, saying that she mostly believes in God, but thinks the Jesus story is silly. That hasn't changed in a few years, so I imagine she might just stick with that perspective for a while.

She wants to learn to cook. I'm hopeful that she wants to learn to clean, too, but you know.

She also wants to become a DJ, with the name DJ Space Monkey.

Schuyler still laughs loudly, runs and jumps around vigorously, touches the people she loves without hesitation and sometimes without much in the way of boundaries. She talks during movies in a stage whisper that isn't even remotely quiet. Being with Schuyler is a very physical and not at all subtle experience, something that no doubt comes from so many years of having to employ physicality in her communications. We try to help her adjust to a more polite community around her, but to be honest, it's one of the things about her that I'm the lest interesting in losing as she gets older. Typhoon Schuyler is the merriest of storms.

Most of all, Schuyler still wants to be a teacher. She gravitates towards advocacy in ways that as a parent I never dared to hope for. I'm not sure you can teach a child to be truly empathetic. You can only hold that door open. Schuyler's got the biggest heart in the world. She still wants to help others like herself, people "with little monsters of their own".

At sixteen, Schuyler is still the radiant center of the universe. Well, I can only speak for myself.


Christine G. said...

Long live DJ Space Monkey.
Beautiful post, Rob. Simply beautiful.

Mike Davis said...

Happy Birthday!

sheila said...

Yes, it was a beautiful post, a lovely and loving tribute to your beautiful daughter. Happy Birthday, Schuyler, 16 is a fun year.

agrimliset said...


Happy Birthday, Schuyler! I totally want to shave the sides of my head too, but I feel as a grown up and parent I probably shouldnt. Poo! Maybe in the summer when it's hot? ;)

Kate Schmidt said...

I love you guys so much.

Unknown said...

Sixteen. SIXTEEN? It just occurred to me how long I have been watching Schuyler's life unfold here on this blog. I calculated about 10 or 12 years. Give or take. It's hard to estimate. While she was growing and thriving, my life was slowly imploding for various reasons but each time I read the blog I smiled and silently cheered on this amazing little girl. I sometimes would think to myself, my monsters are not an iota as large and scary as hers. And she has always faced them with her obvious passion, confidence and love of life. If only a small portion of the world could be filled with people like you and Schuyler, it would be a much better place indeed.

Schuyler, this part is for you. I wish you the happiest of birthdays. Sixteen is such an amazing age with so many doors opening. You have defied so many odds and brought so much insight into your world through your father that all I can say is that you have inspired me many, many times. I am looking forward to seeing what 2016 holds for you!

Mary Cyrus said...

Aw c'mon, let the kid have the cool standout haircut. :) I sure as heck didn't ask my parents' permission when I came home from a party with a buzz cut at 17! A few guy friends were shaving each other's heads and I announced that I was going next. No illicit substances were involved. I rocked a buzz cut on and off for a few years after that. It was never my parents' favorite, but it was an expression of independence and they understood that. A little bit off the sides isn't any crazier than crazy hair colors in my book. Just my unsolicited advice of the day. ;)

Happy Birthday to your daughter! I hope the next year brings good things, and the sort of challenges that help her grow rather than discourage her. I hope she continues to improve in understanding the subtle cues of her peers, and forms more relationships, romantic or otherwise. 16 can be a tough year for anyone. I hope it's a year that's kind to Schuyler.

jamielea said...

Happy belated birthday Schuyler from a fellow Star Wars nerd! Hope you got to see The Force Awakens for your birthday :)

jamielea said...

Happy belated birthday Schuyler from a fellow Star Wars nerd! I'm hoping you got to see The Force Awakens for your birthday. May the force be with you!

Mr. Jones said...

I come back to your blog periodically and am always appreciative of the passage of time. I remember reading about your troubles pre-Schuyler. It seems SO long ago. I remember the posts about the pregnancy, and about being a new father, and the fight for a diagnosis. The bombshell that was the X-Ray post.

So many little moments and you shared them all with us - I admire your bravery, sir. I appreciate your openness.

Thank you to you and your family. Thank you for letting us share your experience.

Cassandra said...

Wow, whoa. I discovered your book and your blog around the time Schuyler's Monster was published—I cannot believe Schulyer is sixteen already. What a cool young adult she is and is becoming—that part doesn't surprise me at all. Thank you for sharing these glimpses of her over the years. It's really a privilege.