September 13, 2020

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.




July 31, 2020

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.