When I was a very young child, I knew what I was going to be when I grew up. I was going to be a zookeeper. I don’t know where that came from, exactly. I loved animals (then as now; just witness the ridiculous new giant chinchilla cage sitting behind me as I write this), so I guess to me five year-old mind, it made sense. The zookeeper was the guy with all the animals. There was a certain logic at work. And he could make other people actually clean up all the poop, so it seemed like a sweet gig.
As I grew older, I had a very brief period around the fifth grade when I thought the thing I wanted to do with my life was play baseball. It didn’t take long for me to let go of that particular dream. During my brief Little League career with the team sponsored by the local paper (the Odessa American, by golly), it was clear that even among gawky eleven year olds, I was a pretty poor baseball player.
When I began playing trombone in junior high, what became my longest running and most serious future aspiration was born. I was going to be a professional musician one day. Maybe I was going to play trombone, or perhaps I would become a band director. In college I decided I would become a musicologist. But music was my destiny, that was clear. That particular dream took a long time to let go of, and honestly, I still sort of quietly identify myself as a trombonist first and foremost. (My current skill level would not necessarily back that up.)
It was in high school that I discovered that I could write, but I didn’t really take it seriously as a future until later in college. And it wasn’t until I had Schuyler and began walking down her path with her that I found my subject, both of my book and my subsequent writing.
More than that, though, I found my life’s work.
I suspect that parents of neurotypical, unimpaired children come to feel like their lives eventually revolve around their kids. For parents of kids with disabilities, however, this becomes the literal truth. Whatever we were doing before, wherever we were heading with our lives, those things remain, but it is in the full-time and unending work we do for and with our children that comes to take the lion’s share of our souls. It is the work that drives our days, and it is the future anxiety that keeps us awake at night. Whatever I thought my life was going to be, I am now Schuyler’s father.
I would never describe that job as easy; just the worry about her future, especially after I’m gone, incrementally eats away at me like a mouse hiding in the walls of a house. But having said that, and having acknowledged the challenges that we as a family face and the even greater ones faced by many others, I can nevertheless tell you this without hesitation. I have never entertained a dream, no matter how secretly epic, that has ever come close to the deep satisfaction and immeasurable personal growth that I experience as a result of being Schuyler’s dad.
I’m a much better person because of Schuyler. I can remember the person I was before she was born and before her monster was identified, and I’m not impressed with him. I’ve not exactly arrived at the person I want to be now, either, but I can kind of see what that guy might look like. Schuyler’s the one who has shown that to me.
It wasn’t her job to do that; she doesn’t exist to make me a better person to to be anyone’s special little inspiration. But the byproduct of her life is extraordinary. Not just for me, but for everyone in her life.
Schuyler has become my life’s work. In doing so, she has given me such a life to work with.