July 31, 2019

Sixteen Years of Monster Life

Sixteen years ago today, everything changed. I mean, nothing changed, but everything changed. 

Schuyler was diagnosed with polymicrogyria on this day in 2003.

I think back to that day sometimes, a day that I described in the prologue to my book. In a lot of ways, it marked an end to the person I was at the time, probably a lot more fun but also more selfish and seriously lacking in self-reflection. It also began my transition to the person I am now: smarter, more sensitive to the people around me, more socially aware and a stronger advocate, but also more cynical, more curmudgeonly, a bit of a scold and a wet blanket, and like every single special needs parent I know, poor (the only special needs parents who have a little money are the ones that started off with a LOT of money) and tired. Face more lined, body more worn, bank account less robust. 

Disability parenting is rewarding, and I wouldn’t trade my life with Schuyler for anything. But it puts miles on you, and they are city miles at that.

I’m writing about how that day changed me because mine is the story I can tell. What did it mean for Schuyler? She doesn’t remember it, of course. She was three years old, after all. Her little monster has been with her from birth and before, of course, but it’s also been a known adversary for as long as she can remember. For Schuyler, an accurate diagnosis meant a corrected and appropriate course set for her future. School, medical evaluation and treatment, therapy, life planning, all of this began in earnest with that diagnosis. For her, it was an entirely good thing.

And for me? That’s more complicated, I guess. That day made things harder in my life, it took away options for a narrative of success that our society values and that I would have valued as well, and it broke my fucking heart right in two. That break healed, but god, the scars it left.

New Haven, CT (August 2003)

But Schuyler’s diagnosis made me a better father. It unlocked a level of empathy that I’d shamefully kept closed for most of my younger, stupid life. Because she was never going to talk like everyone else, I became a good listener, and a devoted and skilled interpreter of her odd but beautiful way of speaking. I became sadder, but I also learned to appreciate real, authentic joy. I learned that the world is a hard place for vulnerable people, but it’s also richer and more beautiful than I ever imagined at a cursory glance.

And I learned how to write, and maybe helped some people.

Would I change anything? It’s tempting to say that if I had the power to change Schuyler’s development in utero and let her have the brain she was supposed to have and the life she could have had from that, then yes, I would absolutely change that. I know that’s not the accepted disability advocate position to take, but I’m just going to have to be honest and say that I don’t care much about getting that right every time. If I could change that for her, I might. That’s just the honest truth. Schuyler was robbed, and I’ll never ever be entirely okay with that.

But having that power taken off the table, would I do things differently? Would I surround Schuyler with different people and explore different paths? Yeah, I would. But I also wouldn’t trade one moment, not a single second, fighting for her and stepping on toes and most of all immersing myself in the world of Schuyler.

If I could do it again, I’d spend more time with her. We’d watch more monster movies, we’d eat more ice cream (sorry, doctors), we’d travel more, see more places, breathe more country air, visit more museums, attend more concerts, make more friends, love more people, pet more dogs, read more books, do more THINGS.

Funny thing about that list, though. We can still do all that.

New Haven, CT (August 2003)


Solitary Diner (Also Known as The Frugalish Physician) said...

I'm a doctor, and I just ate ice cream. Life isn't only for doing "what's right" all the time; it's also to be enjoyed.

Thank you for sharing your and Schuyler's journey with us from the very beginning. I can't believe I've been following along for so many years!

Unknown said...

Rob, Rob, Rob.

I've been following your blog for many years. I enjoy it and hate it so so much.
We have so much in common, you and I. Our kids are virtually the same age, heck, they were born only miles apart (We were up in Hartford as you were down in New Haven). We've had quite a number of experiences seemingly in common.

My son was born early, at 25 weeks. He was a pound and a half. We knew from the beginning that if he survived we would have a hard row to hoe. Well he did. His official diagnoses was C-P. He was in a wheelchair and non-verbal his entire life. I found you through an AAC site and have been lurking on your life ever since.

Those first years were rough. Figuring out how to navigate all of the insurance and healthcare, not to mention figuring out how to just live life with this tiny, fragile human that is completely dependent upon you. That's hard at any time, but when he's going to have to have a couple of dozen major surgeries in his first year? including MANY brain surgeries? That's REALLY hard. It's even harder when you're trying to grow up yourself, ya know?

So yeah, when I found your book and your site, it resonated with me immediately. Obliviously I didn't know you, but I KNEW you. It's been painful and fun to read.

Painful is how I would characterize it right now. I hadn't come here for months. We lost our wonderful son this past November. He would have been 20 last Friday. Sufficed to say, this has been a really, really rough year.

Thank you for putting yourself out there and sharing yourself and your wonderful daughter with us. Hug her extra tight tonight, please.

Good on you, Rob. Get that heart strong, and play your weird horn some more.