Interesting Times

I haven't written much here, not for a while. Part of that is the simple fact that blogging has become something of a dying... well, I won't say "art", exactly. Writing is writing, as far as I'm concerned, but as a way to deliver the written word, blogging has sort of lost its shine with the cool kids. Since I am passionately devoted to being as uncool as humanly possible (ever see my high school senior photo, the one where I have a firm grip on both my trombone and my virginity?), I'm going to go back to blogging for a while as I get deeper into my new book. I find I miss this kind of writing, and it helps me process my thoughts for my other work, the kind that will hopefully result once again in the killing of many trees. And it's probably cheaper than therapy, plus I don't get called out if I try to lie to you. So, blogging it is.

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When writing about Schuyler and myself in my posts on social media, I've been painting a pretty rosy picture of our lives this last year or so. That picture isn't inaccurate; I have been in a wonderful place, a happy place of renewal and personal satisfaction, and Schuyler has been growing and experiencing the world in a very different and exciting way. We're happy here. We're very, very happy.

As I mentioned about a year ago ("Dispatch from the Land of the Eighty-five Percent"), however, the trip to get here was complicated and not without pain and loss. I left wreckage in my wake, I will admit that and own it entirely. I guess it's up to the people in my life to decide how they feel about that. For some, including members of my family, it's too much, and I accept that (as if I have another choice). Other friends understand how complicated the human heart can be and are at least trying to find room for grace. That's really all I can ask for.

If you read my book, you might remember a chapter called “Nothing Makes Us So Lonely as Our Secrets”, in which I discuss a relationship I had during the early years of my marriage, and how it fell apart. The end of that relationship represented what I thought was going to be the great heartbreak of my life. Of course, almost exactly a year later, Schuyler's polymicrogyria diagnosis taught me what devastating heartbreak could really feel like, and how capable I was of surviving it, albeit at great cost.

When I wrote about that relationship (in fictionalized terms to protect the innocent and guilty alike) in Schuyler's Monster about five years later, I wrapped up the end this way:

At Grand Central Terminal, when it was time for me to get on my train, Madeline impulsively returned to New Haven with me, to my now empty house. The next morning, I drove her to the train station, held her for a long moment and kissed her goodbye. I watched her walk down the long passage to the train platform, and I knew in that place in the center of my chest, the one with the sharp but not unbearable pain, that I would never see her again.

I was right.

And that was true, until it wasn't.

We found each other again, after almost twenty years.

And we got married last May.

So when I said I'd never see her again, I was wrong. Happily, epically, gloriously wrong.

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So here's the part where things become complicated, because they're real. And they affect Schuyler in ways that are new for her.

Schuyler and I are now part of a grand new experiment, the blending of two families, and it's been challenging. Adrienne (the Real Wifely Person Formerly Known as Madeline) has kids, and she's got an ex with whom I have a problematic relationship. If you were to ask me if that creates a hard situation for everyone involved, I might inquire as to whether you were amused by the pope's headwear.

The Brady Bunch was a filthy lie. Don't let anyone tell you differently.

I'm now living with my tenacious daughter and a woman who loves her, and who also loves me unconditionally despite my encyclopedic catalogue of flaws. Into this happy scene we mix people, children and adults alike, who are not necessarily inclined to share in our bliss. Schuyler always wanted siblings but was denied by fate and our choices made with incomplete medical information. She’s getting them now, and learning what the rest of us who had brothers and sisters always knew. 

Sometimes they just suck.

And then sometimes they are wonderful. That’s a price the universe makes you pay, I guess. One of many.

Schuyler is an extraordinary person, the finest human I know by a country mile, but she’s not easy. She’s something of a mystery box, presenting as childlike in some ways and then remarkably beyond her years in others. That whole “this person with an intellectual disability presents as such-and-such age rather than their actual chronological years” has never been a very good metric for most people with developmental disabilities, and it’s particularly unhelpful where Schuyler is concerned.

Schuyler can be almost unwaveringly positive, except when she plunges into occasional depths that can seem unrecoverable in the moment. She loves with her whole heart, almost distressingly so for me, but she tends toward paranoia and can hold a grudge like no one else I know, except perhaps for her old man. Most of all, Schuyler sometimes finds herself in the grip of powerful emotions that she doesn’t entirely understand or know what to do with. I can try to prepare new people in her life for what she’s like, but there’s really only one way to learn.

You jump into the deep water where Schuyler swims, and you figure that shit out in a hurry, perhaps while trying to teach yourself to swim as you go.

In some ways, that’s where everyone in Schuyler’s life is right now, in the daunting part of unfamiliar and choppy waters. But they’re not actually deadly waters, and God knows they’re not stagnant. She's going to have to figure the new people around her out in a hurry, and they're going to have to learn to give her the grace to do so. I wish there was more I could do to make that process work. My inability to do so feels like I'm failing, and in the midst of my extreme happiness, it's a dark spot that I find myself unable to turn away from.

There's an ancient Chinese saying that is neither ancient nor Chinese. "May you live in interesting times." The conventional disagreement about the saying is simply this: Is it a blessing or a curse?

The answer, of course, is yes.

Eighteen Years of Monstering

 If you've read Schuyler's Monster, you may remember the opening scene, the meeting with a neurologist at Yale at which we received Schuyler's Polymicrogyria diagnosis. In that scene, I described the feeling this way:

At the time, when friends would attempt to comfort us by saying that at least we had an answer, at least we knew what the problem was now, I explained how it felt. Imagine walking through the woods at night, all alone. In the darkness behind you, something is following, stalking you. You can hear it disturbing the leaves as it moves, and while it never goes away, it remains hidden from view. In your mind, you wonder. What is it? A feral dog? A coyote? Or even a mountain lion? Your imagination kicks into high gear and your mind conjures up the most likely explanations. Suddenly you stumble into an open area bathed in moonlight. You step to the center and turn to see what is following you.

The bushes part, and out steps a Tyrannosaurus rex.

That’s how it felt, this answer to Schuyler’s mystery.

That meeting took place eighteen years ago today.

We've lived a lifetime since that day. That's almost literally true. Moving back to Texas, Schuyler's entire experience with assistive technology, every moment of her school life, a book and all the advocacy that sprung from it, the best and the toughest moments of a marriage and parenting partnership that didn't ultimately survive, every day of Schuyler's life as a Texan, every seizure she ever endured, every band performance she ever participated in, a pandemic and a move across the country, and our transition to new life and a new chance at happiness with a stepmother who adores her (and me, I like to think), ALL of this has occurred in the space between this moment and that beautiful, horrible afternoon in New Haven eighteen years ago.

Schuyler has lived a life that has been sometimes wonderful beyond description and at other times difficult in ways I can never fully grasp, and she's still just getting started with what that adult life will look like. But eighteen years ago, we met her constant traveling companion, the thing in her brain that she always called her little monster.

I struggled to accept that reality at the time. I struggle with it to this day, as does Schuyler. As do we all.

Christmas 2020

On this Christmas morning, I want to reach out to everyone whose lives have radically changed this year. 

That's certainly true of Schuyler and me, and only some of that is due to the pandemic. Last Christmas was something of a disaster, mostly because we were in the middle of a divorce, and you can say all you want about the very best intentions, but that word "amicable" still has a lot of room for heartbreak.

We're here now, in a new town with new people we love around us, and that's a positive thing, but it's also challenging. Christmas is the season of joy and connecting with the ones you love, but it's also a time of traditions. Not just about preserving our own traditions and our own sense of family, either. It's also about making space for everyone else's ways, their hopes and their routines and rituals, and respecting them as much as you do your own. I have a lot of work to do there. 

When families change and form into new things, it can be difficult to hang onto the traditions that matter. But they do matter, very much, and I've been trying my very best to keep alive the ones that are meaningful to Schuyler. That's my job as her father, and more than ever since I upended her life so radically this year. It's important for her to feel like she belongs here, and for the people here to find a reason to accept us into their world. I suppose that's true for me as well. I'm not sure I'm succeeding, but there it is. I try and I fail and I try again. Maybe it's the "try again" part that matters, although that doesn't feel especially true in the moment.

Moving away from an unhappy situation and trying to build a better one is a positive thing, but it's complicated for all of us. A lot of bridges burned down this year, which I guess is normal in a divorce but hurts a lot nevertheless, at Christmas most of all. Most of the time I'm good with it, and so is Schuyler, because she recognizes that our home wasn't a happy one and that we were stuck in a place that couldn't last. This is better, for all of us, not just Schuyler and me but for Julie and her family, too.

But at Christmas, it can all feel daunting, like it's just too big. That's the thing I'm working on with Schuyler today, and myself as well.

As I look through Facebook, I see it in a lot of your posts. Things are different, and things are hard. I'm not sure what to say about that, certainly nothing to make things better for anyone. But I guess if I had a Christmas message, it would be simply that I see you. I see how hard it is, and the fact that it's hard for everyone doesn't diminish that at all. It makes it harder to feel seen. So at least know that I see how difficult it is. If one person truly sees, you can be pretty sure that lots more do, too.

I hope that wherever you are, in whatever situation you find yourself in, you're finding a way to make it work. And in that effort, I hope you will find an authentic and lasting joy.

Dispatch from the Land of the Eighty-five Percent

So. I suppose we have some catching up to do.

Schuyler and I are in Virginia. Where we live.

Well, that's partially true. Schuyler lives here half the time, splitting her time from month to month with her mother, who now lives in Michigan. It's not complicated on paper, as divorce rarely is, but in practice it's probably going to be fraught with unforeseen peril, as divorce almost always is. I have Schuyler here with me for one more week, and then my month without her begins. I think we can all predict how well I'll take that, but there it is. The price of change. Perhaps it's the fee for exchanging the predictable ennui of an unhappy but drama-free marriage for a happy life full of wild promise but no guarantees.

For Schuyler, it has been a challenge, but one that her mother and I have committed to making as seamless as possible. Schuyler knows one thing beyond all denial. She is loved. Her parents love her deeply, of course, and I hope the gradually expanding circles of new friends and new family will mean more love, more support, more eyes and hearts watching out for her. There's a lot about this situation that isn't ideal, and her parents' family/friend circles barely intersect (to put it nicely), but for Schuyler, I hope, the negative parts don't touch her life very much.

I keep using that phrase. "I hope."

For a very long time, as long as I've been in the world of disability parenting, there's a statistic that has dogged my family, and all families like ours. You've heard it. It's the one that states that 85% of marriages involving a child with a disability end in divorce.

The interesting thing about that statistic isn't that it is almost certainly apocryphal. It's been recognized for a while now that it's a much more complex situation, and the numbers vary wildly depending on the particulars of every family. Some studies suggest, for example, that parents of kids with Down syndrome are actually less likely to get divorced than average, possibly because they tend to be older and usually married longer. I suppose they get the marital bugs worked out before the more challenging work really begins for them. 

No, the interesting part to me isn't that the 85% divorce rate is almost certainly unsubstantiated. The thing that feels significant to me is that almost universally, at least in my experience, married parents of kids with disabilities hear that statistic and say, "Oh yes, I can believe that." It resonates for a reason.

Tolstoy wasn't wrong when he wrote in Anna Karenina that happy families are all alike, but every unhappy family is unhappy in its own way. (Russians know their stuff when it comes to unhappiness, am I right?) I'm not for a moment suggesting that having a child with a disability makes for an unhappy family. For myself, Schuyler has been the source of inexhaustible joy, and remains so to this day. But the pressures that weigh on families like ours can be daunting, and hard to see sometimes. 

I guess without digging into the details of the Rummel-Hudsons, which are not mine alone to share and also Nunya, I can simply say that Julie and I gave Schuyler and her life everything we had, which was both appropriate and our extreme honor and privilege. In the end, it turned out that we hadn't given very much to each other, not for many, many years. I'm not sure I'd call it a failed marriage -- I don't think many of you could look at the young woman Schuyler has become and conclude that we failed in some meaningful way -- but after twenty-one years, it ran its course and largely ran out of juice in the process. I hate the saying "It is what it is", but I'm not sure I have a better one.

So now we start anew, with Julie back in the land of her youth with her family, and me in a new world, living in the Washington DC area with a woman who adores Schuyler and who loves me unconditionally despite my encyclopedic list of faults. We also have a bit of a Brady Bunch scenario with our kids. Schuyler always wanted brothers and sisters, something she was denied by fate and incomplete medical information, but she's getting them now. Slowly, she's figuring it out and finding family she never dreamed of.

I think it's going to work out. I think it's going to be extraordinarily good.

Schuyler is a wonderful person, the finest human I know by a country mile, but she's not easy. She's a bit of a mystery box, presenting as childlike in some ways and then remarkably beyond her twenty years in others. The whole "this person with an intellectual disability presents as such-and-such age rather than their actual physical years" has never been a very good model for most people with developmental disabilities, and it's particularly unhelpful where Schuyler is concerned. 

Schuyler is almost unwaveringly positive, except when she plunges into occasional depths that seem, in the moment, unrecoverable. She loves with her whole heart, almost distressingly so for me, but she tends toward paranoia and can hold a grudge like no one I know (except perhaps her old man). Most of all, Schuyler sometimes finds herself in the grip of powerful emotions that she doesn't entirely know what to do with. I can try to prepare people for what she's like, but there's really only one way to learn. You jump into the deep water where Schuyler swims, and you figure it out in a hurry.

In some ways, that's where we all are, in the daunting part of unfamiliar waters. But they're not treacherous waters, and they're not stagnant. If I had to sum up the state of affairs right now, as we all find our way in different parts of the country and different regions of our hearts, I guess I'd simply say this:

Everyone is doing the very best they can.

And that's no small thing.

Polly at Seventeen

Today is the seventeenth anniversary of Schuyler's diagnosis of polymicrogyria.

There have been times in the past seventeen years when that felt like a thing to be memorialized, a great tragedy like a hurricane or an assassination, both of which feel like an appropriate description of how it felt to stand in the face of such an event and watch someone I loved taken away from me.

But over the years, I guess that's changed, or at least blunted. Schuyler wasn't taken away by her diagnosis. Her little monster didn't arrive that day; it merely stated its long-overdue "How do you do?" I thought I learned about the future that day, but all that really happened was I found out about a journey. Her diagnosis put coordinates into my emotional and spiritual GPS. It said nothing about the destination.

On this day of memory, of thinking back to that awful afternoon in the pediatrician's office at Yale as I saw that brain scan and Schuyler's unwelcome passenger for the first time, Schuyler goes back to work at KidZania and prepares to depart Texas for new adventures next month. Her little monster comes with her, of course, as it does everywhere and always will.

But the important thing for me is this: PMG comes with her, but it doesn't get to drive. And it doesn't get to define her, either. It wasn't that long ago that it felt like the thing that controlled her life.

Now? It's just a thing.

A Short Ride in a Fast Machine

There’s a dream I’ve had repeatedly in my life, including quite recently. In this dream, I am driving down a long, remote West Texas road at high speed, with no other cars around me. I’m going fast, in that way you hurtle forward on a desert highway when the perspective tricks you into picking what feels like leisurely pace until you look down and you’re doing ninety miles per hour. The sun is setting, the sky exploding in reds and oranges and a deepening purple.

Suddenly, without warning or drama, the wheel comes off in my hand. I’m holding it, gripped with panic, as the car continues down the road. I hit the brakes but of course they do nothing. In my dream, I know they’ll be unresponsive before I even touch my foot to the pedal. The car rockets down the road, still following its straight line, but with no indication of what’s to come. That’s my dream, and it’s almost embarrassingly transparent, but then I guess my dreams have never been subtle.

The past few weeks have followed a disquieting theme. Last month, one of my very best friends from Interlochen died, out of the blue on the other side of the world. He was young, forty-five, an esteemed musician who was apparently universally beloved. He was handsome and fit, he looked like Captain America, for fuck's sake, and in a horrible instant his heart, that most unreliable of organs, turned on him, and he was gone. Just like that. His sudden death was inexplicable at the time. It remains so today.

Last week, a friend from high school was also suddenly taken, also by an uncooperative and unforgiving heart. And last night I learned that the first band director to ever hire me as a low brass teacher back when I was in college died over the weekend. I guess I’m at the age now where I have more funerals than weddings in my future. It’s not a trend I’m enjoying.

Through it all, I live.

Tomorrow is my birthday. I’ll be fifty-two, assuming I make it through the rest of the day today. (I like my chances.) Fifty-two is an age my poor wretched father never got to be, and honestly, there were times this past year when I felt like I might miss out as well. But I’m here. I live. My own problematic heart keeps showing up for work and powering me through. Every morning I get out of the shower and catch a glimpse of myself in the mirror, with this ugly scar that’s much less daunting than before, but which still tells a story I’m not sure I understand--not after losing my friend. How is he gone and I’m still here? I’m not sure it feels unfair, exactly. It just doesn’t seem to make sense.

I started running a few months ago, with the encouragement of someone who is entirely uninterested in attending my funeral. I never thought I’d be a runner, and to be clear, I’m a terrible one. I lurch forward like the undead, slowly and gracelessly, and I only emanate real joy when I collapse at the end. But I finished a 5k in September and am planning on more. Every time I step on the road, it feels like both an encouragement to my potentially murderous heart, and a defiant gesture. Come on, motherfucker. We’re doing this.

The past nine months (has it really been that long?) have felt as chaotic as any point in my life. And yet, I’m not sure I feel like the wheel has come off in my hands, not exactly. I don’t know, maybe it has, but with the possibility that veering off the road might lead to something surprising and fulfilling and not just a fiery death. It’s certainly true that the wheel hasn’t just come off in my hands. I wrenched it from its place, with purpose and selfish abandon. If I do hurtle off a cliff, I have no one to blame but myself.

Through it all, the primary thing in my life that has given me purpose remains the most important part for me, and it’s also the most chaotic. Schuyler remains, and she moves forward into a future that is now very much her present. If my future is unsure, if it’s to be glorious or a cautionary tale, a lengthy journey or a short ride in a fast machine, that life is always going to have her at the center of it all for me. And that’s something I draw a great deal of comfort from.

Schuyler turns twenty years old next month. Stop for a moment and consider the unlikely sound of those words. Some of you have been reading since before my book and even before her diagnosis, all the way back to the beginning. You’ve been reading this story for twenty years now. I assume you’re starting to feel some aches and pains in your bones now, too.

After ending her internship and briefly working at a hobby store in a position that turned out to be an almost cliched example of what disability employment looks like to far too many people, Schuyler interviewed at and was immediately hired by a place called Kidzania. Follow that link, and imagine a place where kids 14 and younger get to explore their possible futures in the most over-the-top and ridiculously fun way possible. It’s as if Willy Wonka changed jobs and became a career guidance counselor.

Schuyler moves through this new world with a skill and a grace I frankly worried she might not ever possess, to my deep shame. She communicates verbally now with a clarity that belies the years she spent modeling with speech tech and working with speech language pathologists. She makes choices that are good ones; smart ones. At Kidzania, it was her suggestion that they spell her name “Skylar” on her badge so that the little kids she works with will have an easier time with it. Most of all, she’s handling some tough family stuff with maturity.

As I told her last night, I always wondered about the adult she would one day become. And she has turned out to be exactly the young woman I always hoped she would be.

The future is as uncertain as it’s ever been, for me and for Schuyler and for the people we love around us. But I’m going to dare to hope that it’s going to be okay. I’m believing in that, and willing it with all the energy I possess to be so.