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.

Three Weeks Broken

Here’s a fun fact that I just recently learned. When they (the people who make up such things, almost certainly with a clipboard in hand) determine survival rates for people who survive procedures such as open heart surgery, they don’t just count those who made it off the table and back to their rooms. For some major categories, they actually measure the rate of survival for thirty days, beginning with the surgery and ending with the cake decorated with “ONE MONTH DEATH-FREE, WOO!” in heart-healthy icing on top.

So this is perhaps a bit premature. Watch for a posthumous “edited to add: Oops, never mind, yikes…” But for now, tonight, three weeks and a couple of days after I voluntarily allowed someone to take a little buzzy saw to my sternum and open me up like a piñata, I’m going to risk the jinx.

I’m still alive.

But Jesus Howard Christ, do I still hurt.

---

What did you do for Valentine’s Day? Something nice? Something boozy? Something resentful and Netflix-y?

I showed up at a fancy hospital with a cute but gigantic heart logo on the outside of the building and a serious commitment to branding (the restaurant is the Heart Rock Cafe, I kid you not) and had me some heart surgery.

As it turned out, I got the deluxe package, the quadruple bypass. (Is there a quintuple version? Did I get ripped off?) This sounds both a little badass and vaguely awful, like something you get if you are in an emergency situation. Or, you know, if you are extremely elderly.

But the truth is, the surgeon got in, started poking around at my shitty, shitty heart and decided that it looked better than he expected, but since he was already in, what the hell? Just as easy to do them all, right? So it was perhaps less “oh my god, quadruple bypass for the old fart!” and maybe more “while I was under the hood, I swapped out your plugs and changed the wiper fluid”.

The plan was that I would wake up slowly, and by the time I was actually conscious, the tube would be removed from my throat and I would miss the part that everyone says is the worst.

Yeah, not so much.

When I came to at about 1:30 in the morning, it was all at once, so dramatically that I scared the nurse and started choking. She was so flustered that she began shouting at me, trying to tell me that everything was fine and I needed to breathe normally. I slowed my panic, and for what I can say with certainty was the worst forty-five minutes of my life, I desperately tried to keep breathing and not allow this horrible alarm to go off again. The alarm signaled that I was fucking up the simple act of breathing, which was not what medical professionals categorize as “encouraging”.

Finally, they removed the tube, which was exactly as horrible and discombobulating as I’d been told it would be. I lay there breathing on my own, aware that I was in a body that felt like someone else’s and apparently had a large invisible cow sitting on its shotgun-ventilated chest. The nurse asked me to say my name. I tried to say “Rob” but nothing beyond a whisper escape my lips. She gave me the teeniest of tiny sips of water from a straw.

“Can you say something?” asked the nurse kindly, her hand touching my face. I turned very slightly and looked at her.

“Motherfucker,” I croaked.

---

So when you imagine recovering from heart surgery, you might imagine being in a hospital bed for a week or two. You would be mistaken! As soon as the morning shift really got going, I was moved from my bed to a big comfy recliner and never really went back. (Indeed, three weeks later, I still haven’t spent more than five or ten minutes in a bed. Lying down is still a little... ouchy.)

And it was only a little later that same morning when an occupational therapist, who was the nicest, sweetest, gentlest Nazi dominatrix torturer I’ve ever met, got me out of that chair and had me drag my poor, broken body for a grand total of 200 feet around the floor of the hospital. A couple of times a day we repeated this, only once with a walker and always a little further than before.

At first, it was ridiculously pathetic. I had zero stamina, very little breath capacity, shaky balance and a giant hole in my body that hadn’t been there before. The first time I was out, a gentleman who must have been well into his eighties breezed past me with his OT, cheerfully encouraging me as he whisked by. I was too tired and unsteady with my walker to give him the finger, which is probably for the best.

I went in on a Thursday, and was released on Monday. They give you the little wheelchair ride to the car when you’re released from the hospital, and while I know it’s a liability thing, I always imagine it as a ceremonial rite of passage. But this time, it was entirely necessary. As I wearily got into the car, carrying the heart pillow the hospital had given me and the fun little stuffed heart that I’d given Schuyler but which she’d almost immediately loaned right back to me, I felt entirely ill-equipped to face the world outside the hospital.

And then we drove away. Just like that.

---

I’d tell you about the past three weeks at home, except that pretty much describes it. I can tell you that the view from my own recliner doesn’t change much. I can attest to the fact that Wayne Brady and Drew Carrey are both excellent hosts of Let’s Make a Deal and The Price is Right, and that I never get tired of singing along with the tuba/trombone combo when someone fails to win their prize. If you’ve ever looked at those motorized carts at the grocery store and wondered if they are as much fun to drive as they look, I’m here to tell you that yeah, they kind of are.

And if you have Frontier cable, you should know that it does the same sloth-shaming that Netflix does, where a message pops up making sure there’s still a human being watching the programming.

Don’t judge me, tv. I have a hole in me. You’re supposed to fill it.

---

So let’s talk about that hole.

I’ll just say it. It’s large. It’s large, and for some reason my incision is weirdly jagged at the ends, like they didn’t make the hole big enough and had to open it up some more. The idea that this hole might have been insufficient for whatever they were doing is astounding to me. It’s roughly the size I would imagine you’d require to install a microwave.

I want to talk about my body, because it’s the thing that’s in the air but I think most people don’t want to talk about. Which is a pity, because I know people worry about the changes to their bodies after a big surgery like this, and we’re told that the differences will be negligible. And in a few months, that may very well be true.

But now? Three weeks out? I’m in a body that looks extreme. I get out of the shower and I see it in the mirror, and the sight never fails to catch me up just a little.

My skin is pale, almost alarmingly so, and I have no upper body strength or muscle structure at all. At the same time, I still have a little of the weight I gained from surgery, although most of that was fluid and it’s pretty much gone now. (Fun fact: they give you so much in the way of fluids that you actually gain weight, and kind of a lot, in the hospital. Insult to injury right there.) So I look like a skinny, almost emaciated fat guy. That is, as you might imagine, disconcerting.

And I have holes. In addition to the giant vertical incision, which looks as nasty as you imagine, there are holes from where drainage tubes were inserted during the surgery. They don’t appear to be in any hurry to go away. I have random smaller holes from various ports and IVs and such. Some I have no idea where they’re from, honestly. And my right leg has an ugly incision from where they took a vein for my shitty, shitty heart. Additionally, much of that same leg is purple, and I mean seriously purple. Like, Grimace purple.

I look like a shark attack victim, perhaps one that washed up on the beach a few days later.

As of today, three weeks after surgery for a condition which I never felt or was physically aware of at any time (except possible a little fatigue towards the end), I still look like a wreck. I do not look or feel like I went in sick and came out better. Not by a long shot. I feel like I got tricked.

I look like a wreck, my chest still hurts rather a lot, my breaths still feel shallow, and any time I cough or sneeze, it feels, with zero exaggeration, like I’m getting stabbed with a big serial killer knife, right in the chest. Three weeks later, I still clutch that big heart pillow to my chest when I cough and try to ignore the sensation that my chest is going to burst open and my guts are going to explode forth, like that scene from Alien.

This is, by the way, apparently a common sensation with heart surgery survivors, of whose numbers I get to count myself in a few short days.

So yeah. I’m not going to lie. This fucking sucks. And I know it beats being dead, except not entirely, not always, not at every single moment. And that’s the other thing they might not tell you ahead of time.

Being under anesthesia for that many hours carries a risk. Because it takes a while, sometimes days or even weeks, for the effects of that anesthesia to completely leave your body. And that’s FINE. Better too much than too little where that’s concerned. But with the anesthesia, and the painkillers, which are mighty, come the risk of a real deep black depression settling into your bones. Unless it was already there, in which case it gets a shiny new crown and gets to walk around like it owns the place.

It’s important to talk about this, and no one did before my surgery. I wish we had. I really wish we had.

---

One reason I wanted to do this little wrap up, even though it’s a little ahead of schedule (me not being an actual survivor yet, for example), is that I realized the other day that there had been an important (if subtle) shift in my feelings.

I didn’t feel like I was going to die, not like before.

When I say that, I don’t mean it like “Man, I was in so much pain, I felt like I was going to DIE!” I mean literally, ever since the moment I woke up and freaked out under intubation, all the way up to the present, I have felt like I’m going to die. I have felt broken, wildly so. I have felt depressed, more than I let anyone know. I feel closer to the earth. At night I am keenly aware of the sound of my own heart beating, so much so that I need to mask it with music, because I get caught up with listening to it, which honestly means listening and waiting to hear it stop.

I have felt a very real shadow hanging over me. It feels visceral, it feels inevitable, and God forgive me, it has on occasion felt frankly welcome.

And that’s the hard thing no one talks about. I have felt like I was going to die, and I have been okay with that much of the time. And neither of those are probably optimal.

Today, I feel a little less like that. I have felt less of it for two days, so I guess it’s okay to talk about it now. The thought that I could live long enough to turn 52 or to vote for the next president or see the next Star Wars movie or take Schuyler to the beach this summer or go back to work or do anything in even the very near future has been simply unthinkable to me.

The future has been a closed door for me for three weeks. Today it feels like maybe that’s not true, and while it’s a subtle and perhaps temporary change, it’s enough for now. It’s not necessarily light, but it’s not darkness, either.

---

As I sit writing this, my tv is tuned to a channel that just plays classical music all day. I love this channel; much of the time it’s playing stuff I’ve never heard before. But tonight, they’ve opted for one of my favorites, Beethoven’s 9th Symphony. Such a cliche, I know, but whatever. It’s overplayed because it’s great, maybe the greatest work of musical art ever composed.

It’s full of pathos and anger and tenderness, of the joy of living and the specter of death. It’s hopeful, almost ridiculously so, but it’s not an unearned joy. Beethoven makes you work to get there. You might not make it through the first three movements. A lot of listeners don’t. But if you do, if you stick around for that unashamedly joyous chorus, you will be forever changed.

I will confess without shame, I stopped writing to sob when the Ode to Joy burst forth. I haven’t cried since the surgery, except for involuntary tears while I was intubated, so I guess I was due.

---

And tomorrow, it all begins again. I have a rehearsal for the brass band in which I play trombone and ophicleide, and it will be my first time back to music in three weeks, aside from playing a little just to make sure I still could. Another week at home and then hopefully I will be cleared to return to work. The glue and stitches from my horrible wound are beginning to fall off on their own, and they are revealing a scar that is perhaps a little less severe than I feared.

And so whatever is next is next. I’ll take this for what it is, for as long as it gives me with the little girl I love and the universe I both resent and marvel at, Melville’s grand rough world that I’m not quite finished with. Unless it turns out I am, in which case, I think I’m okay with that, too. I tried my best to make a difference, and I’ll keep doing so if given the opportunity.

“You millions, I embrace you. This kiss is for all the world.”

Just One of Those Things

Last week I had a heart catheter procedure, to measure the amount of blockage in my shitty, shitty heart and possible put in a stent or two. Put them in, send me home, back to work in a day or two, right?

That’s not what ultimately happened. No, I’m going to have open heart bypass surgery. Well. I didn’t see that coming.

Tomorrow afternoon, I meet my heart surgeon, hopefully to get this thing scheduled. I’ll meet the man who will literally have my life in my hands. So, you know, big day.

I’ll admit it, I’ve been in a weird, unpleasant emotional place ever since I found out where this whole thing is heading. I’ve been thinking about the future but also trying to shake this sense of dread, this sense that the future might not be a thing for me. Like maybe I prematurely celebrated outliving my father, who has become a very unquiet ghost indeed. I want to believe in that future, more than anything. And I know this procedure has like a 95% survival rate, but as one person recently pointed out, someone’s got to be in that five percent.

 I’ve had this guy sitting on my desk in my office for months; he’s probably my favorite monster. Warner Bros. calls him Gossamer, but once Schuyler pointed out that he looked like an angry heart, he became my representative Shitty Heart Monster. My feelings about him are also complicated; he’s trying to hurt me, but I obviously have high hopes for him and his future, which is my future, too.

I’m giving him to Schuyler when I go in for my surgery, and she’ll take care of him until I come out. It’ll be easy, I keep telling myself. A trip to the moon on gossamer wings, as Cole Porter said.

 We shall see.

Matters of the Heart

So I guess I’m going to talk about this thing, which has nothing to do with disability advocacy or Schuyler, except of course it does, because those are the parts of my life that I couldn’t separate from the rest even if I wanted to, and I very much don’t.

Last March, as you might remember, I had a hospital scare that ended in me getting my own health regimen back on track. That day sucked, to be sure, and it was followed by plenty more that were also pretty awful. But it ended up for the best, I suppose. I got better and my health improved to a point where it was more solid than it’s been in years. I ended up traveling with Schuyler to extraordinary places and had equally extraordinary experiences. And to stay on top of my health, I’ve been going to the doctor regularly, because that’s what normal people do, I guess. So I hear.

Things were going well, right up until early October when my doctor detected a faint heart murmur that wasn’t there before. He wasn’t overly concerned, so I took his lead and decided not to be all that concerned, either. He referred me to a cardiologist, just to be thorough, and a few weeks later, me and my mumbling heart took a stress test. When no red lights or alarms went off and no one called me back for a few days, I assumed I got an A. Which was cool; I didn’t even study.

About a week later, my cardiologist called me out of the blue, late one evening. According to my test results, at some point in the past few months, I apparently suffered a heart attack.

A heart attack. 

As they say in the movies, I didn’t feel a thing.

I never felt any crushing chest pain or shooting agony in my arm or cold sweats or barfing or any of that. I didn’t fall to my knees, one hand clutching at my chest, the other reaching to the sky. If I noticed anything at all, I certainly don’t remember it. Maybe I thought I had gas. Perhaps I just farted and went on with my life, unaware that my shitty, shitty heart just said, “Fuck you, Rob” and silently tried to murder me.

It failed, of course. I am STRONG like BOOL.

So. This is my new reality. I am a guy who survived a heart attack and didn’t even know it. I mean, that’s worth a few badass points, right? Just a couple? I don’t know a lot yet. I have an echocardiogram in a few days, and a heart cath procedure in January, which seems like a long time to leave me at the mercy of my murderous heart, but I’m also taking that as a sign that my cardiologist doesn’t think I’m in mortal peril. So I’ve got that going for me, which is nice.

I honestly don’t know how to feel about this. On one hand, I feel absolutely fine. Or I did. Naturally, now that I know, every single little pain or twitch sets off alarms. Tightness in my chest? Doesn’t matter if I was reaching into the back seat of my car to get something. Clearly, it’s the Big One. Random aches and pains? It’s the baby Jesus taking me home. Today I felt vaguely unwell, so I once again looked up the symptoms of a silent heart attack. (Apparently mine was of this polite variety.) Just so you know, those symptoms are pretty much identical with “stuff that happens to you when you are older than forty”. I read the list and thought “wow, I’ve been having this heart attack for ten years. Wicked.”

But behind all my joking (which apparently amuses no one except me, but whatever; if I keel over dead tomorrow, I’d like my final post on social media to be both entertaining and creepily prescient), there’s an undeniable truth. I’m pretty sure I already knew this, but as it turns out, I’m mortal.

For parents of people with disabilities, that mortality feels like it comes with a heavy price. It caries fear, not just of death but of the chaos it leaves behind. That brooding fear is inevitably accompanied by guilt for abandoning someone who needs me and will likely always need me, even after she no longer has me.

And that weighs on me.

Schuyler and I have been talking about this, because I don’t believe in hiding the hard stuff from her, not one bit. She sees through my dumb jokes and cavalier attitude. She knows what could happen, and she knows she’s not ready for that world. She might actually be wrong about that, which is a thought that eases my worry a little.

But we’re not ready to be done with each other. We have adventures left to embark upon. We need more time, we have beautiful, risky ventures awaiting us. I’m not ready for that to be done.

A few days after getting that fun phone call, Schuyler and I grabbed my tiny euphonium and drove a couple of hours away to join a bunch of other low brass musicians in playing Tuba Christmas in Wichita Falls. The next day we did it again here in our own town, and we’re going to hit two more next week, including Christmas Eve in Dallas. I’m still in love with being a big dumb nerd and playing my horn with other big dumb nerds. I still want to get a tuba before I die. (I even found a used one super cheap that I love, if anyone feels like throwing their money away to grant the dying wish of a feeble old man trying desperately not to go into the light, coff coff…) I actually got paid the other day for playing the ophicleide in public for people who weren’t even being held against their will, which isn’t nothing. I’ve got shit to do.

And I have a remarkable young lady to do those things with, and more. I have someone I need to walk down the aisle one day. I have unborn grandchildren to meet. I have glorious risks to take and a rowdy, rough life to live. I’m not loving being faced with the tangible suggestion that I could run out of time far earlier than I’d planned. My father died from a crap heart at fifty-one, the same age I am now. I’m not a big fan of repeating history.

If I am out of time, perhaps this is how I’d like to be remembered, in a photo taken last weekend by Schuyler, my biggest fan and the engine that runs my faulty but doggedly determined old heart. Just a dork with a really dumb hat and a tiny euphonium. I could do much worse.

The Big Fall

I’ve always known that this fall, and I mean specifically the autumn of 2017, was going to be a big deal. The numbers line up in an interesting way. If you’re a young person and you’re having a child at the age of thirty-two, do the math. It means you’ll turn fifty the same year your kid turns eighteen.

Which is what’s about to happen here.

It’s funny how you can look forward to, or perhaps dread, a coming change and still be at least mildly surprised at how it manifests itself. I guess that’s been a constant in raising Schuyler, and I suppose in parenting any kid with a significant difference. The only thing you can count on is when those anticipated moments arrive, they won’t play out exactly like you thought they might. Blessing, curse, whatever. An unconventional life is what you get.

For Schuyler, her eighteenth birthday is arriving faster than she wanted, I think. There are things to consider. She’s going to be added to our bank account soon. (Oh, the vast treasures that await her from that yawning pit of gold!) We’re exploring all the limited guardianship options, trying to strike that balance between the independence she deserves and the protection and help she still so desperately needs. School is winding down, with all its irritations and dramas but also its safety and federally-mandated giving-a-damn about her welfare.

She’s had a pretty good senior year so far, I think. She’s taking some interesting classes, including an outdoor education class where they learn about camping and outdoor living and survival skills, so she’s set for life in post-apocalyptic Plano. And apparently they’re learning to use power saws in her Theater Tech class, so absolutely nothing to worry about there. Significantly, after four years of marching band and inexplicable seizures in the stands during football games, we finally figured out how to stop them using sound-dampening ear muffs (designed for gun enthusiasts, ironically for this snotty liberal family). Nice that we solved that issue in time for her last five games. Well, what are you going to do?

I spoke to her band director recently, and he noted that Schuyler has come a long way since last year. She’s more confident, quicker to reach out to her classmates. Her social anxiety is still there, but she hates it and how it holds her back, and so she’s powering through it in ways I never learned how to do.

The ultimate test of that comes next week, because, and I can’t emphasize enough how momentous this is, Schuyler was asked by a nice young man to go to the Homecoming dance next weekend. If you don’t have a kid with a profound difference, you might not get what a big deal this is. Not because a kid is doing her a favor and taking her, which is how these kinds of things tend to play out in our popular media. No, it’s a big deal because someone saw past the extra work it takes with someone like Schuyler and saw the reality of exactly how amazing and unique she is. It’s a big deal because someone picked up an emerald in an unlikely place and recognized it for the valuable gem it is.

Schuyler and kids like her spend so much time on the outside of those social spheres. Even in campus communities like Schuyler’s, where she is generally well-received and accepted, it can sometimes feel like there are places she and her different classmates simply don’t travel. Homecoming is one of those, until it isn’t. Schuyler has asked about Homecoming and Prom in the past, and I haven’t known what to tell her. Now I can simply say “You’re going, and your dress looks FANTASTIC, and you’re going to have a big ol’ Texas mum the size of your head, and I’m going to take an embarrassing number of photos, and shut up, I’m not crying, YOU are.”

And a month and a half after that, four days before Christmas, she will turn eighteen. Just like that.

A month before that happens, however, I will celebrate, if that’s the right word, my own significant birthday. Let’s call it “forty-ten”. I’m torn between being slightly horrified by that fact and at the same time mildly and pleasantly surprised that I made it this far.

Pulling up to the fifty station has been occasion for a lot of self-examination, as I suspect it is for most people at this age. I’ve been facing some truths about myself that perhaps I’d internalized for a while. It’s probably not unusual to reach a point on your life’s calendar where you begin to question what you’re doing and how much it really matters. I’ve been looking at the world, not just my place in it, and it’s becoming harder and harder to imagine I’m making much of a difference.

I speak about disability issues, both in writing and in front of conference audiences, and the older I get, the more impassioned those species become. A few years ago, in a presentation in Ohio, I transitioned from mostly speaking about assistive technology and special education issues to a more activist, disability-rights-as-human-rights, “to the barricades and lets set something on fire” kind of speech. I’m good with that; I feel more driven to that kind of advocacy, particularly as assistive technology becomes a smaller piece in Schuyler’s life, as it inevitably must.

This past year has been tough, though. I don’t think I’m alone amongst disability advocacy writers and speakers in feeling that way. I stand in front of groups of special educators or speech language therapists, and I love them for what they do. But I’m also aware that I’m not reaching very many people who aren’t already with me. They have strong and beautiful voices, but they’re still the choir, and I’m preaching to them.

And then I turn on the television or wade into the swamp that Facebook has become, and I see people gleefully talking about intentionally taking advances away from people with disabilities. I hear people from all over the political spectrum calling each other “something-tards”, and the same tired old “free speech versus being a goddamn decent human being” arguments raging. I watch brave fighters in wheelchairs forcing the police to carry them away from protests because they refuse to move, refuse to be silenced. And that’s incredible, that’s a level of bravery I don’t see very often, but I ask myself “Why are we in a place, in 2017, where disability advocacy has again become a literal fight for existence? How did that happen? And why are people like myself not making any progress in stopping it?”

I’m working on another book, which I’ve said before and meant before, too. I’d describe it as less memoir, more unhinged manifesto. Now that Schuyler is leaving school, I guess I feel like it’s an appropriate time to revisit her world, and the bigger, rougher one she’s swimming out into. But my faith in my ability to effectively light fuses has been shaken, and I’m not sure how to get my mojo back.

I think I’m a fair writer on a good day, but while it satisfies something crucial in my soul, I wouldn’t say it makes me happy. And advocacy for me is part penance, part mission, one that I couldn’t turn away from if I wanted to, which sometimes, honestly, I’d kind of like to do. As I approach fifty, I do so with a sense of feeling slightly untethered.

The one thing that I find myself turning to after all these years is music. When asked what I do, my first impulse is still to say “I’m a trombonist”, although given the evidence of what comes out of my horn when I play these days (besides dust), perhaps I need to brush up a bit more. Music is the thing that makes me happy, even though I’m probably no damn good at it anymore. I’m going to grab onto that for a while and see where it takes me.

For our birthdays, Schuyler and I are wishing for big things. She wants a tattoo, and the old “Oh, sorry, we’d love to make that happen but the law says you have to be eighteen” dodge has finally come home to bite us on our asses. So, a tattoo it is, and to be fair, she’s got some good ideas. Also, and this is kind of shitty of me to say, but I’m not sure I have faith in her pain tolerance. She may end up getting a comma, in a twelve-point font, before she bails. But she’s a resilient kid. Or young adult, really.

As for me, I want to learn a new instrument, an unusual one called an ophicleide. Schuyler wants to be the one who gives it to me, so much so that she started an online fundraiser, which did my old man heart good. She’s a much nicer kid than I realistically should have ever expected to produce, and perhaps just getting to take undeserved credit for that is gift enough. Also, I suspect she really wants to hear me moo like a cow.

So, a dragon tattoo and a 19th century French fart horn. We’ve got this birthday thing covered. The rest of it, the big, broken world and the shrinking pool of empathy and the coming void that I’m trying to hard to ignore? They can wait.

So it goes.

I haven't written much about Las Vegas. Part of the reason is that it turns out Schuyler and I have a random weird association with the event. Nothing exceptionally personal, but one of those “goose walked over my grave” kinds of things.

Almost eight years ago, two of our dearest friends got married in Vegas, and since it was on Schuyler’s tenth birthday and they adore their goddaughter, they turned their reception into a birthday party for her as well, with a beautiful cake and some of the people she loves most. The photos I took of Schuyler that evening are among my favorites ever, as are the memories we made that day. The ceremony was held in a beautiful chapel in the Mandalay Bay Hotel. The reception? In a very fancy suite on the 32nd floor.

Yeah, that one.

So there’s some extra feelings about this tragedy, but not because I think there’s anything so grim in the world that it can automatically besmirch a perfect day just because of dumb coincidence. But it does mean that when reporters describe the scene that took place inside that room, I can see it vividly in my head.

I dreamed last night that both events were happening at the same time, with love and laughter and cake and most of all people I love, including a little girl in a pink plastic birthday tiara who happens to be the whole world to me, but also with a dark figure skulking behind everyone, moving from window to window. I was the only one who could see him, but for some reason I couldn’t tell anyone. That was an exceptional shitty dream.

So yeah. That fun fact has tied my tongue a little. More than that, though, I simply don't have much left to contribute. I feel like I said what I needed to say after Sandy Hook, but as others have pointed out, apparently we as a society have decided that dead six-year-olds are the price we're willing to pay in order to make sure gun fetishists keep their unfettered access to weapons of mass murder. Who am I to tell society they're wrong?

A couple of weeks ago, there was a shooting in Plano, blocks from my apartment, that ended up being the worst mass shooting in the US in 2017 so far. I'm shocked that it took this long to lose the title, honestly. I drive by it a few times a week, including this morning, and I watch it slowly turn from a crime scene surrounded by police cars and news vans to a memorial site covered with wreaths and teddy bears to what it is now, a sad and darkened house with one simple cross in the yard. Soon it'll just be property for sale. And soon Vegas will go back to being a place people go to party and gamble and forget how fucked up the world is, even in the shadow of Mandalay Bay.

And we'll forget, mostly. Not because we don't care, but because there'll be somewhere else stained in blood on our screens. New faces, new frenzied chyrons, new central casting terrorist bad guys (if they are people of color) or lone wolves with mental illness (if they're white). This is a show that never gets cancelled.

There’ll always be another one, and eventually a worse one, because we bought this scenario with the blood of children. And if there’s one thing this nation appreciates, it’s how to get our money’s worth. If you can convince yourself not to care about strangers who die, suddenly our big loud gun hobby just became a bargain. We like bargains in this country.

And so it goes. See you at the next one.

From the bottom of the sea

Today at Support for Special Needs:

Excerpt: 

Schuyler's world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn't quite the same as that in which the rest of us live. She's got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there'll be no shipwreck this time.

"...the song woke his heart into the darkness and sadness of joy..."

There's a quote that seems to originate from a number of sources, which isn't surprising since it's not terribly original. But it is terribly true.

"You may be done with the past, but the past isn't done with you."

I returned to West Texas this week for that most compelling of homecoming reasons, a funeral. My Aunt Kay died last week. She was married to my father's brother, but she was also my mother's childhood friend. The four of them were the closest of friends, and that closeness applied to all of the cousins as well. We functioned like an immediate family; all of my childhood memories include my cousin/best friend, as well as her cooler-than-cool dad and her impossibly kind and good-hearted mom. When Uncle Tommy died in 1979 and our families drifted apart, something cracked in my family. When my father died eleven years later, that something shattered altogether. I don't think we ever entirely recovered.

Going home this week was about saying goodbye to someone who existed as a central fixture in my childhood, but it also served to try to place that childhood family experience in a larger context. Schuyler went back with me, partly because I thought it was important for her to begin trying to understand the whole end of life process but also because selfishly, I didn't want to go alone. Five and a half hours in the car from Plano to Odessa leaves a lot of time for conversation. When Schuyler asked if she had ever met Kay, I realized with sadness and shame that they had actually only met once, when Schuyler was a baby. It had been so long since I'd seen Kay, or my cousin Pam, either. Pam and I spent our childhoods basically functioning as brother and sister, and I hadn't seen her in fifteen years. Aunt Kay was part of a different life, one in which my family was whole and the future was whatever any of us wanted it to be. My life hasn't turned out like I ever imagined it would back then. Maybe that's true of us all, I don't know.

It happens, I suppose. You put your head down and you live your life, and then one day something terrible happens and you realize that you've let things slip out of your hands that never should have been treated so casually. I loved my Aunt Kay, as I loved and idolized my Uncle Tommy and as I adored my cousin. My memories of them are almost entirely from childhood, from a time so long ago that it feels slightly unreal in my memory, and from a place so unlike anywhere else in the world that it is almost impossible to describe without sounding like I'm making it up. West Texas in the 1970s really does represent a world that was very different from whatever past you probably know.

The time of my childhood is remote. The place, less so. Returning to Odessa is always something of an emotional shake up for me, but now, in the context of returning to embrace not just family but the family and the life of the past, it really is overwhelming. I sometimes turn to music to put it in perspective. Not the popular music of my youth, or the country music that was always present when my father was around. I actually associate home with specific classical pieces. Aaron Copland's celebrated Americana, for instance, like the slow movements of Billy the Kid or Rodeo or even the very end of Appalachian Spring. Big, lonely prairie landscapes in sound, albeit a little cliched.

The music I associate with home isn't about cowboys or even people, which is just as well since my ancestors weren't cowboys or romantic lawmen or heroes of the Alamo. They were the oilfield poor, living in primitive camp houses with faded, peeling paint and cheap screen doors and the occasional snake in the living room. That was my family's world, at least until my father's generation changed course. Uncle Tommy joined the army and moved to New York for a time, probably enough to get a taste for a life different from his own father's. My own father quit the oilfield after watching a friend and coworker burn to death in a horrible accident. My family grew from a hard and dirty industry, but one that hardly any of us still living have any experience with. I have petroleum in my blood, but none under my fingernails. For the first time in my life, I actually find that I regret that, maybe just a little.

Growing up there, I always understood something about Odessa, or any town out in the desert, and it's something of which I'm still very aware. Experiencing that part of the country isn't really about understanding the towns, not even larger ones like Odessa or Midland. West Texas gets under your skin when you drive outside the city limits, and not necessarily all that far, either. As soon as I was old enough to drive, I would sometimes head out to the edge of town, where imported and pampered green gave way to mottled brown. I'd eventually pull off the farm roads and follow a dirt road until I found an open spot where the mesquite bushes had been cleared, usually to accommodate a pumpjack. I'd lay on the hood of my car and listen to the rhythmic wheezing of the well, and I'd watch the sun set in a mess of vivid color and take in the sight of the stars sprawled out across the sky. Sometimes I'd see jackrabbits racing through the brush as I approached, and once I even saw a rattlesnake lazily twisting across the road in front of me. But mostly it was just silence and solitude, bigger than anything I've ever experienced since. The daunting but quiet snows of Michigan, the rolling waves of Long Island Sound, the towering Redwoods of northern California, some of my favorite places in the world, but none could quite compare to the almost oppressive silence of the West Texas desert.

When I'm not there, when I'm living my life in various cities as I have since I left Odessa at eighteen, I still feel the desert of West Texas. When I'm in large groups of people or in busy parts of the city, surrounded by beautiful chaos, part of me is still back home in wind-tossed solitude. Back in my youth with my family, including all those who have slipped away in some way or another, I didn't understand it, I don't think. I didn't really hear the weird, loud silence of West Texas.

My father did, I know that now. He longed to get out into the wilder parts, and we did, often. My father and I had a complicated relationship, as he had with most of our family, and I didn't always fully appreciate trips to the lake or the camping excursions to places like Fort Davis or Big Bend. But I guess I was soaking it in just the same, because I think I'd give just about anything to go back. Not just to the place, but to all of it, with my mom and my dad and his cool older brother who never got to be old in my memories, with my own siblings and my cousin, and with my aunt, to whom I never got to say goodbye. I never got to say goodbye to any of the ones I lost; my family hasn't had a surplus of lingering hospital deaths. Just unexpected phone calls with sad voices and then hurriedly packed suitcases. And memories, played out against that huge desert, always present.

I left the desert as soon as I was old enough, or I guess I thought I did. Maybe those of us who lived there never really get to entirely leave it behind. It speaks to me. Is that strange? West Texas has a voice, and a kind of ancient loneliness. It predates the current fracking boom that has exploded my town with apartments renting for two grand a month but which will probably be occupied by mice in a few years now that the bust is looming. It's a towering sadness that goes back before high school football and my family's departure from the oilfields, back before dusty depression era towns and the first oil strikes, before the US Army and its experimental camels and before the Mexican settlers or the invading Conquistadors before them, before the missionaries came with their god and even before the Mescalero-Apache and Comanche came with theirs. I can imagine the desert how it must have been before humans arrived at all, because it almost certainly wasn't very different at all from now.

That looming sadness comes not from tragedy or hardship, although that desert has certainly known plenty of both, as my own family knows all too well. I think it comes from that very timelessness, that sense like nowhere else in the world I've ever seen, that this world has rolled along for millions of years, and our presence won't matter for more than a blink. A few jackrabbits will hear us and scatter, and maybe our footsteps will startle a few horny toads (if we can even find them anymore), but that's about it.

And yet, those of us who lived there and those who have gone back to that receiving earth are a part of the West Texas desert. I've known so many people who have visited it and who simply don't understand how anyone could feel fondness and that low-burning homesickness for such a hard, barren place. Those of us who grew up there joke about its remoteness and its flatness and the rough people who live there, people with whom we like to pretend we have nothing in common but from whom in reality we are separated only by years and experiences.

I hear it all the time, and I've said it to myself many times over the years.

"How could you ever live in such a place?"

And then that ancient voice whispers, "How could you think you could ever truly leave?"

The Tao of Daddy-O

When Schuyler was little, and I mean very little, back before she was even a real person just yet, I would worry about things. Some of my anxieties were sensible, regular parent stuff. Others were frankly kind of weird. I worried about big bitey dogs at the park in New Haven, and maniacs grabbing her out of her stroller on the upper level of the mall and throwing her over the side. And don't even get me started on those gaping rain gutters at the side of the road. I worried about a lot of monsters, although ultimately I guess I missed the real ones.

Sometimes, many times, I worried about what my bond with Schuyler would look like as she grew older. My relationship with my own father wasn't a very good template. He wasn't a gentle person with me when I was young, and as I grew up, my father softened but still never quite understood the man I was growing up to be. I think he wanted to sometimes, but he was perhaps limited in the scope and diversity of his thinking, and I was that walking cliché, the angry and unforgiving teenager. I always thought we'd figure it out one day, but it didn't quite work out that way. Four years after I'd last seen my dad, when I received the phone call from home, he'd been gone for a few hours already. He was alive one moment, chatting with a neighbor in his yard, and then he just crumbled, dead before he hit the ground. He suffered an aneurism in his heart, which I didn't even know was a thing. I was twenty-two. He's been gone longer than I had him now, but I don't think I ever actually had him, not really.

I never had a good example of the kind of father I should be to Schuyler, although I guess I had a pretty reasonable cautionary tale instead, and that was probably good enough. I never knew exactly how a father was supposed to be, so instead I just gave her me.

I didn't know back then if that was going to be enough. I'm certainly not sure now. But I remember a few things about being my father's son. I remember feeling like I wasn't being told the truth, which it turns out I wasn't, and I remember feeling invisible, even disposable, which as it turned out, I kind of was. I recall, in the center of me where the visceral memories live, wondering if my father loved me, and now, only four years younger than he was at his death, I still can't answer that for sure. It's taken me a long time to understand that whether he did or not isn't my concern, not really. Maybe he didn't. He probably should have; I was a pretty cool kid, relatively speaking. So that's on him.

With Schuyler, I've written many times that I could promise her love, and I could promise her the truth. I've probably dropped the ball on that second part more than a few times, but if there's something I think I can say for sure, it's that she's never asked herself if her father loves her. If I were gone tomorrow, she wouldn't spend the rest of her days wondering. And if that's all I ever gave her, I don't know. Maybe that's enough.

I believe Schuyler sees her father for who he is, and that's not always easy for her, I know. She watches me lose my temper, she hears me tell inappropriate jokes, and perhaps most importantly, she sees me when I'm sad. I used to worry about her, deeply concerned that she'd inherit my tendency toward depression. I still worry about it sometimes, but not as much now. Schuyler gets sad, and God knows she's got reasons to. But she seems to be made of stronger stuff than I am. I suspect she's going to be okay.

Schuyler sees when I'm in that little cave. She's observed it a lot lately, and I can tell she understands. We don't talk about it much, but she's cuddlier, quicker to hug and slower to let go. She'll sit next to me on the couch and just take my hand, or touch my shoulder. I don't know if she means to, but I feel like she's telling me I'm not alone, at the moments she senses I feel it the most.

When she was younger, I used to imagine, perhaps morbidly, what she would remember about me if I were gone. As she grew older, I'd be less of a memory and more of a constructed father idea. When I was really down on myself, I sometimes imagined that wouldn't be so terrible for her. She could have a real, live, fucked up father, or she could have a shining ghost, a phantom who would fill that father space, even just in her inventive heart, in ways I probably never could in real life. Tragic, to be sure, the little girl growing up without her father. But the world would step up and take care of her, and I'd be whoever she needed me to be.

Schuyler is now fifteen, almost sixteen. If I were gone now, she'd have memories of me. Actual flawed me, but one she seems to love quite a bit. I don't think I brag very often, and I'm not sure I feel like I have a lot of horns to toot if I wanted to. But if you were to ask me what was truly good about my life, and what I was proud of about myself, I think my answer would be pretty clear. I have a weird and wonderful kid, the very best of all possible daughters, and she loves the fucking shit out of me.

When Schuyler was younger, somewhere she picked up a word that she began to call me. I was her Daddy-O. I never thought it would stick, but it has. And as goofy as it may sound, it's absolutely and truly my favorite word in the world.

Schuyler is unique in all the world, in ways that go so far beyond human individuality. Even among folks who share her polymicrogyria, Schuyler presents in a way like no other. To the neuroscientists who have worked with her, she is a mystery, and a marvel. To them, and also to me, albeit for far different reasons.

And I am her Daddy-O. She has given me a name that none of her friends use for their fathers, and I like to think that she's signifying my own uniqueness, too. I'm not sure how true that is, but I take her affection as the gift that it is. I don't really know what I father is supposed to be, so I do the best that I can. Schuyler doesn't know, either, and so even if I am a disappointment, or should be, to her I am that thing that belongs to her and her alone. I am her Daddy-O. No one else gets one of those but her.

There's something strangely comforting now, knowing that if I were gone next year, or next month or tomorrow, Schuyler would have had a me that was real, and one she could remember as a person, as her Daddy-O. She would have walked down a path with me. It wouldn't be a perfect path, and we wouldn't have walked as far together as we would have wanted. But we would have had enough for her to figure out the rest of the way without me. She would know how to laugh and how to love, although if she learned them from me, she would have learned to laugh a little too loudly and to love imperfectly. Neither of those are all that bad, I guess.

I don't know much, either about myself or the future, near or distant. I feel like I know less and less every day, and to be honest, that has been troubling me a great deal of late. Touchstones crumble under our fingertips, and our hearts whisper possibilities in our ears until we hear them as truths. I'm struggling right now, to locate myself and to find my way, like I'm looking for candles in a kitchen drawer during a power outage.

Schuyler knows it, too. I give her smiles and jokes, and she accepts them, but she's the most empathetic person I've ever known. She knows the ground under my feet shifts sometimes, and she responds with love. With love, and with confidence in me, because I'm her father, her one and only Daddy-O, and everything else will sort itself out.

Schuyler believes this. It's important that I try to believe it, too.

Then and Now

Today at Support for Special Needs:

Excerpt: 

When I think back to my high school years, there's a significant difference between then and now. It's a difference that matters, and one that I suspect most people my age might appreciate. When I was in high school, I knew a few people with physical disabilities, but absolutely none with developmental disabilities like Schuyler's. To this day, I have no idea where they were even educated. I'm not going to suggest they were hidden away in some evil dungeon somewhere, eating bugs in the dark or whatever. For all I know, they were receiving a fine education, but they were elsewhere. And my own development as a human being suffered as a result.

Unseen Giants

I wrote a Father's Day piece for my friends over at BridgingApps. They're great people and I'm honored that they're featuring my words.

Happy Father's Day to all my fellow dads of the world. I hope you get a nice tie.

Excerpt: 

If you asked me that oft-repeated but generally useless question, whether or not I'd take my daughter's disability away from her if i could, I won't lie to you. My answer now, as always, would be yes, without hesitation.

Should we want to take away our child's disabling condition? It's a hotly contested question, but it misses the point. The thing we come to learn as special needs fathers is that it doesn't actually matter how we answer. No one is ever going to ask that question as the prelude to a miracle.

We can't fix, but we can see. We can look and really see our kids, and come to understand that their disabilities are a part of their construction, threads that run deep and true in their tapestry. We become caregivers, and we become champions. We learn to fight and we learn to nurture, in ways that the fathers of typical kids might never have to do. We don't allow ourselves to become Homer Simpson because our worlds won't work with that character.

Borrowed Happy

"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." 

- Stephen Chbosky, The Perks of Being a Wallflower

This is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.

I've been thinking about happiness lately.

(Because of privacy rules, this paragraph is going to be vague. Sorry, I know that's irritating.) I recently embarked on a venture of sorts, one that I thought might lead me down a new path, one that would make me genuinely happy. It ultimately didn't, and I'm taking that failure particularly hard, I won't lie. I feel foolish, and I feel disposable, and if there's a worse way to feel, I'm not sure what it might be. I aspired to something, and my wax wings melted pretty quickly.

The thing is, and I think this is significant, I can't remember the last time I did feel authentic happiness. I know it's been a very long time. If the idea of being truly content with my place in the world is so elusive that I can't even tell you how long it's been, I guess maybe that's an issue. I thought I could see the path until this week. I can't, though.

It's important to note that I'm not some sad mopey bastard with not an ounce of happiness in my life. I think rather the opposite. And when I find my confidence again, as I will shortly, I'll be fine. But it's an undeniable truth that the true satisfaction I find myself feeling is almost always a result of Schuyler's happiness. It comes in things large from time to time, but it's mostly the small joys. A monster movie well-realized. A trip to a comic book store that neither of us expected until we found ourselves standing outside. A joke we've told each other a thousand times. ("Knock knock!" "Come in!")

Schuyler experiences joy, and as a result, I feel some of that reflected warmth as well. I suppose, like a lot of parents (Julie very much included), my own happiness has probably become too caught up in my kid's. I've become dependent on the borrowed happiness I get from her.

If that sounds desperate or sad, I guess perhaps it is. But as I stand here at the end of a shaky week, it might just have to be enough, at least for now.

Twenty-four years ago today

It's still complicated.

A Complicated Homecoming

I don't return home to Odessa very often. Probably not nearly enough, anyway. It's been almost three decades since I actually lived there. I left home a few weeks after I graduated from high school, back during the end of the oil boom and the beginning of some tough years for the place, and for my family. In the mid-80s, the oilfield economy was tanking, hard, and the publication of Friday Night Lights a few years later would train a spotlight on West Texas football and education and the community in a way that was ultimately good medicine but at the time probably felt a little like being kicked while they were down.

My father was to die suddenly a few years after I left, too. The aneurism in his heart burst as he stood in his yard talking to a friend; as a doctor later said, he was "dead before he hit the ground". I don't know why I always imagined a death bed scene like something from a movie, where he and I would somehow work things out before he died. What I got instead was a phone call, and a quiet six-hour drive home to Odessa, and another two-hour drive out to the remote cemetery at Paint Creek where he'd inexplicably chosen to be buried.

His last resting place felt ridiculous and cliched at the time, with its dusty plots and wild flowers and lizards, and most of all a kind of desert silence that felt almost loud. But that was then, I guess. Almost twenty-four years later, I can see why it appealed to him. I suppose most people pick a burial spot with the grieving people they leave behind in mind, but not my father. He thought of himself, and the kind of place he'd like to spend eternity, as if he would be doing so sitting in a lawn chair, sipping from that old plastic cup he always carried, the one with the words "The King" written on the side, perhaps with an irony I didn't recognize at the time, in his own hand writing.

So my father is removed from my hometown, and what's left are the family who still call it home. I should visit them more. I wonder sometimes if they think I don't care. I do care, very much. They've all continued to grow and age and have babies who then have babies themselves. My father is stuck in my head forever at the age of fifty-one, only five years older than I am now. If there was to be any wisdom or even self-awareness waiting in his future, it was ultimately denied him. Denied him, and all of us whom he left behind, hurt and wondering at his choices, and at his love. It was hard to see, that love. All these years later, long after it ever ceased to matter, I wonder if his love existed at all. He's no longer in Odessa, but his presence lingers, in memories and the places to which they're tied. Perhaps that's part of why I stay away. My hometown has grown ghosty.

Schuyler has been asking to see her Granny for a while, and my niece had a new baby at the beginning of December, so it felt like a good time to make the drive. As a retail manager, Julie is pretty much out of commission from November to the middle of January, so Schuyler and I pick a time when her mother wouldn't be home much anyway, the last weekend of the year, and we head west together.

Schuyler is a great travel buddy at any time, but going home is particularly fun. It's been a few years since she went back, long enough that the whole experience feels new to her. She sees the things that seem old and tired to me, but with new eyes. She doesn't see the desert like I once did. Schuyler sees a place that is rare and impossibly flat and ready for adventure, as if mummies or dinosaurs are waiting just out of sight. When I was her age, living there, Odessa felt like a prison, with a desert instead of walls. I thought I'd never leave. I saw places on television and in movies that seemed exotic simply because they were green, or densely populated, or on the cusp of a much larger world. New England could have been Mars.

Now, even the remote desert feels new. As soon as we pass the halfway point at Abilene, great spindly wind turbines begin to appear on the low hills on the horizon, and we notice the most unlikely of motion from their gigantic blades. These are the wind farms that have become the new face, and currency, of West Texas. Schuyler is fascinated by them, and I am, too, come to think of it. They seem so alien, like armies of robots in search of something. Even if they didn't represent a commitment to clean energy in maybe the last place on earth I'd expect it, I'd still love them. They add something to the landscape, something modern and peaceful and strong. It's hard to explain.

Odessa and the surrounding area are now in the midst of a boom, but it feels different than the one of my youth. I remember Odessa then, growing, gradually and organically, with things just generally getting a little weirder but a lot nicer as a result. Driving into town now, though, it feels very, very different this time. Housing is impossible to find, I'm told, and the lines at restaurants and local businesses are long and rowdy. The outskirts of town where my friends and I once did our drinking and lighting fireworks and making out are now built up, with lookalike strip malls and the same box stores you find anywhere in America. Passing into the town itself, things feel... diminished. The town of my childhood is still there, and it hasn't changed much except for growing more ragged. I'd hoped the new boom might save my home, and perhaps it will, in some sense. But from my eyes, those now of an outsider, it seems like new Odessa is simply building over the old. I guess that's the way it happens. Maybe that's why you can never go home.

We spend the weekend with my mother, who somehow manages to get older without growing old, and with my sister and her kids and her grandkids. (Yeah, that was a little hard to type.) By total coincidence, Schuyler's godparents are in town, so we get to spend some much-needed time with them. We eat at the fast food places of my youth and visit the sad little mall where I once hung out. We try to buy gear from the local (and new since I'd lived there there) hockey team, the Odessa Jackalopes, in part because the mascot is exactly as much fun as you'd expect (an angry rabbit with antlers) but mostly because there's something about the idea of a hockey team in Odessa that is too weird not to be celebrated. Sadly, the pro shop at "the Jack Shack" (as the Ector County Coliseum is apparently now known) is closed.

Schuyler has lots of questions about my home and my past. She wants to see the places I grew up, particularly the schools I attended. She wants me to show her the routes I walked home from school, as if the thought of doing so was the stuff of wild adventure.

When I post photos of my old schools and other shots around the area up on Facebook, some people take the opportunity to comment on how unattractive my home is. I get that. I recognize that it must be hard for people who come from pretty places to understand how those of us who grew up in harder environments could somehow still have had enjoyable childhoods, or that we might still have fondness for those places, and even find them beautiful. It's like anything else; we make plenty of jokes about "Slowdeatha" or "Odessalation", because we lived it. We did our time. We experienced our youthful days with grit in our mouths. But if someone else tries it, our defenses go up. It's the "he ain't heavy, he's my brother" effect, I guess.

The thing is, Schuyler doesn't seem to see it as ugly, or harsh. When she sees vast dusty acres of high grass and mesquite bushes, she imagines the snakes and jackrabbits and horny toads that must be hiding out there, just waiting for discovery. Schuyler has sand in her blood, I guess. She's got her father's weird love of the desert.

When we leave Odessa to return to Dallas, Schuyler again asks about my father. We leave the interstate and head southeast, for the tiny town of Robert Lee and the remote Paint Creek Cemetery a few miles away. As we drive out past Sterling City, the wind turbines return, like giants both protecting us and beckoning us further. When I see them, I wonder if they hold vigil over my father's grave now, but the road drops into a shallow valley and the wind farms fall behind us. When we arrive at Paint Creek, it looks completely unchanged, not just since I visited last, but in all those long, full years since I watched my father lowered into the chalky ground, taking his secrets with him.

He's keeping them there still.

I will try.

At Support for Special Needs:

I’m not sure I’d call any of these "resolutions". But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person.

The Hardest Forgiveness

Today at Support for Special Needs:

As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves.

A Little Space

This morning, over at Support for Special Needs:

If Schuyler feels comfortable with even a few people in a gathering, she's a social butterfly, and an explosion of personality. But it's different when she's on her own, with no supports and no comfortable narrative to follow. For Schuyler, with communication being as fragile as it is for her, her social anxieties can feed on her in ways I probably can't imagine. She's not on the autism spectrum, nor am I to my knowledge, but in those settings, surrounded by people she doesn't really know but who come at her with a startling familiarity, a kind of sensory overload shuts her down.

"...and I just want to go with you..."

Mothers and fathers have very different relationships with their children. I would never try to describe Schuyler's relationship with her mother, mostly because it's not my story to tell, and I don't understand it all that well myself.

As she grows older, I like to think that Schuyler's relationship with me becomes easier to comprehend, although that's not a given. It's certainly stronger now than it's ever been, which to the parent of a teenager is a very welcome surprise. And yet, it is still very much true that our best moments come in wordless appreciation of each other. We curl up together on the couch and watch terrible monster movies, or play games together on her iPad, or wait outside in the morning air for her bus. Quiet moments sometimes, rowdy at others, but always with an indescribable ease, and the sense that we'll always have each other, no matter what comes our way. This is a great comfort to us both, even if it's fiction. Which it probably is.

She calls me Daddy-O. I call her any number of nicknames. Schuyler Bear. Spacemonkey. Chickenhead Jones. We call each other "Big Dummy" in public places, attractive disapproving looks. Which is fine; that's probably why we do it. We step on the heels of each others' shoes when we walk through stores. We are incapable of walking past toy lightsabers without slicing each others' heads off. We share waffle fries, but she always gets the end pieces, which we call "potato butts". When I ask her if she wants to eat a butt, she always says yes. Burps are always appreciated for their merit. Farts are always funny.

The more I learn about self-advocacy for people with disabilities, the more I feel like I learn from Schuyler's interactions. She does so much communicating, so much of it in ways beyond traditional verbal expression. Talking with Schuyler means taking in so much that is spun out of her wild gestures and her expressions and the tattered remnants of her sign language. Schuyler can be easy to follow sometimes, and yet get her on the phone and she becomes almost impossible to understand, even for those of us who live with her. Schuyler's language is an amalgam of all the ways we all try to make ourselves understood, but it works in a way that is entirely her own. Understanding Schuyler means paying very close attention to her. And that close attention is rewarded, not just in communication but in a kind of intimacy, a closeness that she delights in.

I'm overprotective of Schuyler, even when I try not to be, when I know that she'll be better for taking flight on her own. I let people into her life very sparingly. Sometimes I regret it wildly; most times, she grows from the friendships she makes and I guess I do, too. I watch Schuyler try to navigate her own friendships with kids her own age, and I wish I could make it easier for her, but of course I can't.

There are times that I see something else in Schuyler, something familiar. I watch dark shadows cross her eyes, and I see her frustrations rise at simple obstacles. I observe her need for solitary time, not playing or reading but simply watching videos on her iPad or just sitting. I recognize some of it. I know that we all have our own little monsters, and I fear that polymicrogyria isn't the only one I've given to her. I was probably Schuyler's age when I became aware of my own sadness, the kind that arrives on silent feet and turns the room upside down. I've never done a very good job of managing it, although I've started getting help with it. We're making sure that Schuyler gets help, too. I'm not sure if I'm entirely past my skepticism of that help, but for her, it's a given. She's got a lot that she needs help with. That's not one that she needs to face alone.

We talked about it yesterdayday, when she noted that I seemed a little sad. I explained how for some people, sadness just kind of happens, and it's a thing that we deal with as best as we can. It's just something that happens inside our brains.

"Like my little monster?" she asked. When I said yes, she said "You have a little monster, too!" She was extremely pleased at this, for reasons that both defy explanation and yet make perfect sense.

I don't know if Schuyler will fight that same battle as she gets older. But I worry that if she does, my own sad monster will devour me, as I often feel like it inevitably will, before I get a chance to help Schuyler cope with hers. I hope she learns how to do that better than I ever did.