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.)

July 27, 2017

Season of Change

This week at Support for Special Needs:
Excerpt: 
This will be Schuyler’s senior year in high school, so everything she does will be one in a series of “the last time I’ll get to do this” experiences. For Schuyler and kids like her, much more than for their neurotypical classmates, this is daunting. Schuyler’s future remains clear and imaginable, if not entirely predictable, for maybe ten months. After that, it’s a wall of creeping mist. Does it conceal rich and meaningful adult experiences, or is it a Stephen King kind of mist full of fear and danger and face-eating monsters? Your guess is as good as mine.


(NOTE: This will be my last post at Support for Special Needs for a few months; the site is going on a hiatus. I’ll continue blogging here after this week. The only change in the content will probably be more F-bombs. So you’ve got that to look forward to. My thanks to Support for Special Needs for giving me space to do my thing over the years. I hope to be back there in the near future.)

July 17, 2017

Warriors

Today at Support for Special Needs:
Excerpt: 
Social justice warrior. SJW, to use the not-quite-clever abbreviation. Why would that ever be an insult with any real bite? To those who use that term in a derogatory way, I suspect it sounds funny because they’ve never lived a life where societal injustice has ever left a mark on them or anyone they particularly care about. Do you occupy a world of privilege without ever actually looking outward with empathy or compassion? Then I suppose the idea of people who fight for the dignity and equity of vulnerable populations might seem silly to you. I’ll give you that.

June 28, 2017

The Monster We All Feed

Today at Support for Special Needs:
Excerpt:  
We live in a society where rape culture isn’t just a thing, but a gigantic thing. It’s a monster that we feed constantly, with our popular media and our societal privilege and an institutionalized misogyny that permeates our judicial systems and is now entrenched and protected at the highest levels of the executive. I wish I’d done more in the course of my life to fight that culture of rape and misogyny. I wish my commitment to fighting it had begun in my heart because I’m a human being and not because I’m the father of a daughter. Like the roots of my disability advocacy, it’s a shitty reason for me to care. As a privileged white male in this country, I’m the problem. I should have been talking about this for decades. I have a lot of catching up to do; many of us do.

June 16, 2017

Father’s Day snapshot

Today at Support for Special Needs:
Excerpt: 
When Schuyler and I walk together, she’ll still take my hand or lean against me. She’s more affectionate now than I probably have any right to expect. I always tell myself “You’d better enjoy this; one day she’ll be too embarrassed to show you much affection in public.” But I don’t know. She’s seventeen now, and while she’s still changing and learning so much as she rockets towards her future after high school, it’s starting to feel like we know the person she’s going to be. Looking at Schuyler now is to see the young woman she’s going to be, and probably already is. She’s got an impossibly big heart, and the hard world seems to be failing in its constant mission to shrink it.

May 31, 2017

Productive

This week at Support for Special Needs:
Excerpt: 
So many changes. So much uncertainty. The universe just strapped a rocket pack to Schuyler’s back. We shall see what this phase of her life ultimately looks like, and how well she’ll do as she steps out into a world of superficial but pervasive human valuation. It’s a lot to take in, and I am perhaps more worried about her than I’ve been at any time since her diagnosis fourteen years ago. But even with all her anxiety and also my own, I have to say it. I like her chances.