June 10, 2018

The Folly of Fortune-Telling

In the spring of 2005, Schuyler was evaluated by the diagnosticians and special educators at her school in Manor, Texas, near Austin. They concluded that her fine motor issues would most likely preclude her ever being able to write by hand, and while the extent of her developmental disability was still undefined, it was unlikely that she would ever be able to read or write in any meaningful way.

Additionally, they saw no indication that Schuyler would ever be able to utilize a high-end dynamic voice output device. Such a device was deemed “not educationally necessary”.

In the summer of 2018, Schuyler and I will give a presentation on her journey and her future with PMG, as featured speakers at the Polymicrogyria Family Convention in Denver. The following week, we will travel to the ISAAC conference in Gold Coast, Australia, where she will participate in a leadership workshop with other adult AAC users. In the fall, she will begin an internship at Baylor Scott and White hospital, in a program designed to give young people with disabilities the opportunity for real-world job training and eventual placement.

Before all that, however, this happened:


And if you sent her a gift for her graduation, the thank you note you’ll be receiving this week will be composed and handwritten by Schuyler. Those notes might not be pretty, but they will be authentically hers.

All of Schuyler’s successes belong to her.

The point of all this isn’t that we were right and her earliest evaluators were woefully, dangerously wrong. Although let me be clear: that’s definitely true. The reality is that I’ve gotten plenty wrong about Schuyler. I’ve failed her along the way with remarkably regularity; I’ve probably failed her this week on multiple occasions. I’m not a great dad except in that I mean well, I love her unconditionally, and much like Chumbawamba, I get back up again. If I were to identify my best attribute as a father, that’s probably it. My ability to say “Well, shit, that didn’t work. What else can we do?”

My point, not just for me or Schuyler or even for you but for every educator and every employer and policy maker and citizen, is that the only way the world will work for people with disabilities like Schuyler is if it becomes a place defined by opportunity. Inclusion can’t be a policy or a goal; the time for that is long behind us now. Meaningful inclusion has to reside in our DNA as a society. The idea that we should identify disabled children’s limitations and predict future outcomes based on what we see or think we see was never a good model. It’s an unforgivable one now.

As for Schuyler, I’m left with a torrent of emotions. Chief among them is pride, the kind of unbounded pride that bursts from the cage of trepidatious pragmatism that I’ve constructed over the years. My pride in Schuyler’s achievement runs free now. It sprints toward the future now, a future that is still unknown but which belongs not to poor prognosis or flawed predictions or prejudices and low expectations.

The future belongs to Schuyler and her friends. We need only create a just and inclusive society with opportunities and authentic relationships and real equity. And then get the hell out of their way.

Congratulations, Schuyler, you beautiful epic explorer. What’s next belongs to you.


May 21, 2018

No More Hiding

Schuyler’s time in high school is quickly drawing to a close, faster than either of us are emotionally prepared for. As part of that transition, her percussion studio at Plano Senior had their end-of-the-year pool party yesterday, an annual event that concludes with awards, remembrances of the graduating seniors by her percussion director and a round-the-room sharing and appreciation by all the students in the class.

The final award given is a kind of spirit award, but more than that. It’s named after a former student, one who brought so much enthusiasm and positivity to the band and had such a deep effect on the people around him that the award was created specifically with him in mind. He wasn’t disabled, not that I know of. He just set a bar for bringing a kind of leadership through attitude and personal relationships. He possessed a light, we were told, and a kind of gravity that pulled in the people around him, and the award looked to recognize that quality in others. It’s an interesting award in that the criteria is based on intangibles. It’s one that has a great deal of meaning to the director and to the students.

And this year, the award went to Schuyler.

It was a bit of a surprise, I’ll own that. I worry so much about Schuyler finding acceptance and being understood by the people around her, not just her communication but her overall “Schuylerness”, and out of my fear for her quality of life, I occasionally (and shamefully) forget to make room for the idea that she’s giving something to the world around her. Being surprised by Schuyler’s success is never a reaction that makes me feel like a swell father.

And yet, as her director described the award and the young man for whom it was named and founded, I found myself thinking that in a just world, in a fair and inclusive society, Schuyler could win an award like that. Hearing her name announced did something to me, something weird and hopeful and a little bit guilty for believing that in THIS world, in MY world, Schuyler wouldn’t win, couldn’t break through the barriers that have dogged her and her friends all along. When Schuyler won that award, it spoke to possibilities.

In his comments about Schuyler, her director spoke about her early days in band, and was frank about how so many people at the time simply didn’t get Schuyler. I remember those days. When she got to middle school, something changed for Schuyler. She didn’t charm everyone like she did in elementary school. She confused many of her teachers and frustrated a few. But her band director got her entirely, and that band director was married to the percussion director at Plano Senior. He knew Schuyler already, and he got her. He was one of the primary reasons we elected to send Schuyler to Plano Senior. He and his wife get Schuyler as much as anyone in her life, as much as any family member. They will be profoundly missed when she graduates.

Schuyler’s fellow students spoke about her positivity and how much joy she brought to their lives. One young man spoke about how happy he was to see that he had been assigned to Schuyler’s concert band because she was so much fun to make music with. Another told her how when he saw her at Homecoming, he was taken by how much natural beauty she possessed, and how so much of that came from the person she is at her core. The one thing that none of her fellow percussionists said about Schuyler was that she was an inspiration. The thing that no one did was condescend to her.

That was a big deal. That was a really big deal. I've been writing and speaking about the value of authentic relationships with people with disabilities, about how I believe that's the key to successful disability advocacy and a truly inclusive society. I don't think I give a half-terrible presentation on the topic, either. But Schuyler is my best argument. At times, she's the living embodiment of what I'm trying to describe. She lives and breathes it. Schuyler illustrates the value of getting to truly understand people who are profoundly different and looking past their disability to appreciate the whole human. Not to pretend that disability isn't there or doesn't matter, but rather to put it in a larger, more nuanced context. The kids who have been in band with Schuyler, particularly her fellow percussionists, they started out meeting a girl with a disability, and perhaps a daunting one at the time. But to the best of them, that didn't define her for long.

In a few short weeks, Schuyler will leave the protective environment of school and the community that has come to really know and understand her. That concerns me, of course, because until she got to Plano Senior, Schuyler was dedicated on a fundamental level to passing. If you don’t know that term, in the disability world “passing” refers to the practice among people with more invisible disabilities to pass as neurotypical, to hide their disability and walk through the world with their differences unrecognized.

It’s controversial, the concept of passing, and for good reason. For one thing, at least for Schuyler, it was doomed to fail. Even if she succeeded for 95% of the time (and that would frankly be a high percentage), that last 5% is where it would fall apart, like a commercial plane flight that was 95% successful in taking off and landing safely. Passing for Schuyler meant delaying the inevitable, and it perhaps sent a message that there’s something shameful about her disability, and that she sees herself as less. In a society that struggles to treat people like Schuyler as fully realized human beings, that’s a dangerous path to go down.

When I say dangerous, I mean that literally. My dear friend and speech language mentor Lindsey Paden Cargill recently tweeted the disturbing results of a study showing that passing (or social camouflaging) is the best predictor of suicidality among autistic people. Think of that for a moment. Trying to mask their differences and pass for typical is literally costing neurodiverse people their lives.

Schuyler isn’t autistic, and I realize that there’s only so much that can legitimately be applied to her from that study. But I believe that the more Schuyler attempts to present herself as something she’s not, the more damage she takes on herself. She’s not less. She’s different, and she requires some patience and some accommodation in order to move successfully through the world. But when she’s truly understood and truly known for herself, she takes flight.

I think she’s beginning to get that. Maybe it began when she found her tribe in band at Plano Senior last year. It was certainly strengthened when she began to advocate for herself in the presentations we’ve given over the past few years. Perhaps it’s simply part of her growing up and finding her place in the world, an elusive groove that is only now presenting itself to her. All I know for sure is that she’s excited about this summer, presenting in Denver and in Australia, being surrounded not just by people like her but also by people who aren’t but whom she could maybe reach and find a new understanding.

Recently Schuyler got a new speaker to boost the inadequate sound produced by her iPad. When it arrived, I confess it was larger than we expected. She was looking for something she could attach on a lanyard, but this speaker was a little too large for that. It was also much louder than any speaker she’d used before. Louder, and deeper, more present.

The first time she used it to order at a restaurant, she jumped when her electronic British voice spoke. But the reaction she got was entirely positive, and since then, she’s been using it at full volume most of the time. She’s less afraid of being noticed and more enamored of being actually heard and understood. Finding more success at communicating is apparently worth the risk of being looked at and having her difference recognized.

When I asked her how she liked her big, loud speaker, Schuyler told me that she has a new motto. “No more hiding,” she said.

She may backslide from that from time to time; I can’t imagine she’s done with people who don’t understand what she’s all about and who have no patience or empathetic inclination to try. But yesterday, as she learned just how highly she is regarded among her peers, Schuyler saw with fresh eyes just how much she has to gain from being who she is, without pretense.

I’m looking forward to seeing more of her embracing her authentic self. The world is going to be a better place with that particular Schuyler in it.


May 6, 2018

The Care and Feeding of Monsters

I recently had the surreal but entirely positive experience of revisiting my book on the occasion of its release, ten years after publication, in audiobook form. I began listening as a kind of quality check, bracing myself for the voice actor to introduce “Shooler’s Monster”. (He didn’t; he was actually a fantastic actor, and I couldn’t be more pleased that he was the one who got to spend nine hours in a recording booth instead of me. We were all spared my stuttering, monotone twang. You’re welcome.) I began listening to the first chapter, and then, like a drunk who blacks out and then wakes up the next day pantsless in the park, suddenly I found I’d listened to the whole thing.

I stayed for the entire book, not because it is such a brilliant work of wordsmithery, but rather because I hadn’t actually read the whole thing from beginning to end in, well, probably ten years. Once I stepped into the prologue, back in New Haven with baby Schuyler and that beautiful, horrible afternoon in a late New England summer, all my half-forgotten anxieties and heartbreaks and WTF moments became real to me all over again.

I found myself back in the summer of 2003, when my baby girl was an internally focused and entirely wordless enigma, and the future consisted of a rolling mist, opaque but presumedly fully of hungry, hateful monsters. Schuyler was imperiled by that future, and I was too dumb and too scared to do anyway thing more than step into it with her. 2003 was the summer of “Well, shit, here goes nothing.”

Monsters. Their nature has changed over the years, although they are as omnipresent as ever. I have a small confession to make about the title of my book. Some people hated it, and others found it to be an elegant metaphor, but either way, it wasn’t my brilliant idea, not directly. I’d been referring to “Schuyler’s monster” on my blog for some time before the book was written, but the term itself originally came from Schuyler.

I’ve said many times that the only two things I know for sure I’ll always give Schuyler are love and the truth, and that was true from the very beginning. After her diagnosis, she knew something was wrong, she understood that something big had changed. When I tried to explain it to her on a level that would make some sense to her (as if it made any to me, then or now), her eyes lit up, and she asked a question, with her combination of primitive sign language, even more primitive verbal language, and her omnipresent miming as if her life was an unending game of charades,

Was it a tiny little monster living in her head?

And I thought, You know what? It kind of is. Let’s go with that.

At the time immediately after Schuyler’s diagnosis, in my state of numbed panic and heartbreak, the idea of what a little monster inside her beautiful but inscrutable brain might be doing to her was simple. It was hurting her. It was trampling her future and making its plans to whip up lightning storms inside her sweet little head. It might have even been preparing to extinguish her life altogether. No one knew, and because I’m her father and thus needed to be prepared, I believed the worst case scenarios and stood by, ready to do what I could to protect her from that monster and those storms. I was aware then as I am now, of course, that what I could do to save her was not a goddamn thing.

It’s been almost fifteen years since that awful summer, the one that broke me but not Schuyler. The life she lives now is not the one we were warned to prepare ourselves for. Her brain was badly malformed, maybe as much as three quarters of it affected by her polymicrogyria, but it nevertheless reformed its lines and rewired its functions and is doing its brainly job with style and ingenuity. She had feeding difficulties, but aside from maybe half a dozen terrifying choking incidents, she’s navigated the world of food with gusto, and most of those feeding issues have completely faded. She has intellectual disabilities, but she’s not a fool. She experiences and processes the world around her in her own way, but that way isn't childish or insufficient.

It’s weird and wonderful and cool, Schuyler’s brain world. And she’s right. It has a monster in it.

This monster isn't the one I feared when she was so much younger. It’s not a monster that Schuyler hates, I don’t think, not really. Her polymicrogyria, and the unique life it gives her, is hard, and it lacks navigation or instructions. But after all these years of keeping on keeping on, of finding what works and what she wants to do with the complicated and compromised life she’s been given, Schuyler lives that life always aware of her challenges but not fixated on them. At the impossible age of eighteen, she’s doing her very best, and her very best isn’t bad at all. As a matter of fact, Schuyler’s best is pretty extraordinary.

And there’s a monster there still. She seems less and less motivated to hide it than she was even a year ago, which I believe is a very positive development. She seems less interested in trying to pass for neurotypical than she was even a year ago. Perhaps she’s experienced the world of the neurotypical for long enough to know that we’re not so perfect, or more to the point so undamaged, as she might have once believed. The reality of the world has made a strong case for alternative possibilities she might not have entertained before now.

The typical world is kind of fucked up, in other words. Her atypical life might not be all that lacking after all.

If you’re not a part of the disability community, and by that I mean if you don’t have a disability yourself, or have immediate family members or professional clients with a disability, you might imagine our lives as being an ongoing season of The Disability Show all the time. And I guess on some level that’s true, in that it never goes away. There’s always a monster-shaped chair in every room, and it’s never unoccupied.

Our reality is more subtle than that, however. We don’t talk about it every day, or even most days. The older Schuyler gets, the less she worries about it. And for all that I write about Schuyler’s polymicrogyria and trying to make sense of it, I don’t think of Schuyler as the disabled kid all the time. I’m not always Disability Dad. Sometimes I’m Amateur Musician Dad now, for example; I’ve begun to learn a new instrument (the ophicleide, which is perhaps the ultimate hipster instrument, in that you’ve probably never heard of it). Schuyler helped me get it, starting a little fundraiser last fall, and now she watches me play and asks lots of questions and may in fact be the only human being in both my near and remote orbits who isn’t sick to fucking death of hearing about the goddamn ophicleide. We’re all living our lives as people, and Schuyler’s disability is a significant part of that, but it doesn’t suck up all the oxygen in the room the way it once did.

It’s not that I live in denial. But the fact is, when you know Schuyler, she’s just Schuyler, polymicrogyria and weird ways and rockstar presence and big laugh and all. When you get to know her, she becomes more.

That’s important. The world in general sees someone like Schuyler as less. It sees people like her as diminished members of society, because it doesn’t see them in their totality. People with disabilities are treated like partial people by our society because our society doesn’t know them. Much of our society doesn’t even realize they are knowable. And until those relationships become real, until students in school and adults in their workplaces and tv viewers turning on their favorite shows begin to see people like Schuyler existing and working and laughing and cursing and living messy lives right next to them, there will always be a divide. There will always be an Other. And as a society, we are absolutely shit when it comes to embracing the Other.

Schuyler’s life now is a mix of the typical and the monstered. She attended her school’s Homecoming dance last fall, with a shy young man who asked her to the dance and made her world suddenly bright with possibilities. She went to prom last week with another exceptional young man, this time one whom she invited, perhaps because she’s beginning to understand that if she wants to have the world on her terms, she’s got to spell those terms out herself. This summer we’re speaking to a gathering of polymicrogria families and then traveling to Australia so she can attend a leadership workshop for adults who use assistive speech technology. And at the end of the summer, she’ll enter into an internship at a major local hospital, where she’ll spend about nine months learning valuable job skills in a variety of different positions.

After that, Schuyler will enter the adult world in earnest. She’ll step into the foggiest of fogs, and she’ll lose the protections that school and childhood have cloaked her in. Will the world be ready for her? Is it ready for any of her peers? I sometimes wonder. The speeches I’ve been giving over the past few years have contained a lot of calls to arms where disability rights and societal change and authentic relationships with people like Schuyler are concerned, but I sometimes fear that while the faces in the audience may change, they’re still mostly members of the choir that I’m preaching to.

I want to change the world, and I fear that I can’t. It’s dawning on me now that I’m not going to be the one to do it.

It’ll be Schuyler, and people like her. And they’ll do it because it needs to be done. The rest of us need to help them build a world in which they have the opportunities the rest of us enjoy in our extreme privilege. And when we step back and watch what they do with those opportunities, all I know for certain is that our only appropriate reactions will be ones of respect, and maybe even just a touch of awe.


April 11, 2018

Schuyler's Australian Adventure




Schuyler Hudson is a remarkable young woman with a brain malformation that changes how she experiences the world but does not stop her from living a rewarding and meaningful life. Since the age of five, Schuyler has used assistive speech technology to help her communicate with and experience the world around her. Now eighteen, Schuyler is preparing to graduate from high school and begin her adult life, using AAC technology to help her find her own way even with her profound differences.

This summer, Schuyler has the opportunity to participate in a leadership workshop with a small group of fellow AAC (Augmentative and Alternative Communication) users. The Dare to LEAD Workshop  will take place during the 2018 International Society for Augmentative and Alternative Communication (ISAAC) Conference  on the Gold Coast, Australia on July 26, 2018. Schuyler and the other eight selected participants will develop a plan for turning their proposed visions into future realities, initiating their journey to become leaders locally, nationally or internationally at ISAAC.

Please help Schuyler raise the funds to attend this unique and potentially life-changing opportunity with her AAC-using peers, as well as the leading professionals in the field of augmentative and alternative communication.



Schuyler says:

Hello, my name is Schuyler Hudson, I’m eighteen years old. I would like to come to Australia and learn about how to lead and help people that are different like me. My little monster is called polymicrogyria, or P M G. It make it hard to talk, and sometimes it make it hard to understand things. It makes me different from everyone else. I want to be different, but I want to pick how I’m different.

I call my PMG a little monster because it is super small in my brain and it makes me a little hard to talk and remember something from a long time ago. I don’t think my monster is bad because he he is a part of me. I don’t think he’s a real monster but it fun to think of a little monster in my brain.

Because I want to travel and help, learn at Australia and I can be comfortable using my iPad to talk, that other kids can be comfortable using their iPad, I can teach them how use to talk to other people with their devices, I can meet new people who become my friends who have different kinds of monsters.

I hope you will let me come to Australia, and learn how to help people like me, and also help people in the whole world give people like me get a chance.

October 28, 2017

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.


October 3, 2017

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.

July 28, 2017

Lulu



Today we said goodbye to a member of our family. Today, we lost sweet, sweet Lulu.

She joined our little family fourteen years ago, at a difficult time for us. In the fateful summer of 2003, in the quest to discover the reason for her wordlessness, Schuyler underwent a very traumatic MRI, one where she had to be anesthetized through an IV in the back of her hand. It was awful, and it left us all feeling exhausted and emotionally drained. “You know what?” I said a day or two later. “We’re going to get a motherfucking puppy!”

And that’s how Lulu came to join us.



She was the smallest in her litter, the only black pug in the bunch. She was scrappy, but she had the buggiest eyes and the smushiest face. She was the pug-iest pug in the litter, and had the sweetest disposition. I knew as soon as I saw her that she was the dog for me.

And she always was.

Lulu travelled the streets of New Haven, Connecticut with little Schuyler in her Radio Flyer wagon, and then moved with us to Austin and later to Plano. She watched Schuyler grow from a toddler to a young woman. Lulu bonded deeply with our late Boston terrier Petey, even having a litter of ridiculously cute and rowdy puppies with him about ten years ago, and she endured the addition of Max and his wild shenanigans. A few weeks ago, when we brought our new puppy home, she patiently endured Oscar’s puppy antics, too. She was subjected to endless nicknames, from Samurai Housefly to George Squashington to Fatbug to The Smash. One Halloween, she let us dress her like the Devil with no complaint. Lulu was patient, and she was game for anything. For fourteen years, she has been a constant companion, snorting and farting her gentle way through our lives.



A few days ago, she stopped eating. She also became incontinent and lethargic. When we took her to the vet this morning, we were looking for an answer, a way to restore her to her tail-wagging, happy self. (When Lulu was especially pleased with something, she let one fang stick out of her little sea monster mouth.) We didn’t think we would be leaving without a dog.

The vet gave us some options, expensive surgery that might make sense for a younger dog. But when he gently suggested that this option, and its long recovery, might “buy a little more time”, we knew what he meant. It would buy US more time. Months of pain and discomfort for Lulu, so that we could have more time with her. Our quality of life, not hers. In the end, it was an incredibly difficult choice, and at the same time, a really clear one. Letting her go was the right thing to do.

And yet, all day I’ve felt an unreasonable, impossible impulse. I want to go back to the vet, to hand them our receipt and tell them that I’ve changed my mind, that I’m selfish and cruel but I want more time, one more day even. I want to undo this thing we all did.

I want my dog back. I want my dear friend.


(As we sat waiting for the vet this morning, I took what ended up being my last photo of Lulu. I'm glad I did. For all her pain, she looked like her old self in the moment. She looked at me with love, and, I desperately hope, with forgiveness.)