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.


jromero said...

A frequent reminder in our family, "Ypu do the best you can do and that's the best you can do". First spoken by my bonus son long before we met. Wishing you all many years of love and happiness to help over the bumpy road.

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

I'm sorry to hear about your divorce, and I wish you all the best in the next chapter of your life.

I don't know if you like poetry, but I personally love this one to describe the end of a relationship, and your description of the end of your marriage reminded me of it:

Failing and Flying
By Jack Gilbert

Everyone forgets that Icarus also flew.
It's the same when love comes to an end,
or the marriage fails and people say
they knew it was a mistake, that everybody
said it would never work. That she was
old enough to know better. But anything
worth doing is worth doing badly.
Like being there by that summer ocean
on the other side of the island while
love was fading out of her, the stars
burning so extravagantly those nights that
anyone could tell you they would never last.
Every morning she was asleep in my bed
like a visitation, the gentleness in her
like antelope standing in the dawn mist.
Each afternoon I watched her coming back
through the hot stony field after swimming,
the sea light behind her and the huge sky
on the other side of that. Listened to her
while we ate lunch. How can they say
the marriage failed? Like the people who
came back from Provence (when it was Provence)
and said it was pretty but the food was greasy.
I believe Icarus was not failing as he fell,
but just coming to the end of his triumph.

Becca said...

I'm glad I still have your blog in my RSS feed so that I get the occasional surprise updates like this. I'm glad to hear that you and Schuyler and Julie are well(ish), and that you're all doing the best you can.

Jim Howard said...

I am sorry to hear about your divorce, but I am very glad that both of you are doing your best for your daughter.

Where does the time go?

amylia said...

Glad you finally found what you’ve been looking for. Turns out it was under your nose all along.
Anyone who has read your book cannot be surprised by this ending.

Much love to you all.

thisbe said...

As a fellow Northern Virginia resident, welcome to the DC area! I hope you're enjoying it, as much as anyone can enjoy anywhere in these COVID 19 times. I hope you're all doing well.

Unknown said...

A few things:
1) is that a University of Dayton shirt that Schuyler is wearing? that's....odd ('97 grad here)
2) my wife and i tend to live by the mantra "we made the best decisions that we could with the information we had available at the time." it doesn't make things better, but it makes helps me at least sleep (sometimes)
3) parenting is really hard, special-needs parenting can either draw people together or throw them apart very very easily. it can be like a married couple divorcing very suddenly after many many years once they become empty-nesters.\
4) i really have nothing of import to say, just "dang it Rob, get OUT OF MY HEAD"

hoaglands said...

Rob, I am sitting on my couch in Prospect, Ky finally reading the book a speech therapist friend of mine gave me probably 6 months ago. Hesitantly, I decided to try it because I've been diagnosed with Covid and what the hell else can I do? I was texting her in the beginning that I was pleasantly surprised by how much I liked the beginning because of your perspective and sense of humor. As a fellow "special needs parent" I almost spit my coffee when I read the Holland chapter. And the part about the macaroni name artwork. I actually DID spit my coffee when I read Schuylers diagnosis. My daughter has polymicrogyria!! (Diagnosed by Dr. Dobyns in Chicago) I texted my friend and asked her if she knew when she gave me the book. She didn't. I've never known anyone else with the same diagnosis. Most of our healthcare specialists don't seem to know what it means, either! I am so freakishly excited to finish your book now. And Thank you. Thank you for describing exactly how I have felt. And telling your story. And introducing me to Schuyler. My Olivia is 16. Im excited to share Schuyler with her.