Sometimes we don’t concern ourselves with how Schuyler is so very different from those around her. And when I say that, what I really mean is that of course we concern ourselves with it. It occupies so much of our mental and emotional energy. We try so hard to help her navigate those waters, with all their unseen perils. But there are times, very special times, when we force ourselves to stop doing that. We ask for accommodations from the schools and the world, but in those moments, we pretend that perhaps those accommodations don’t matter so much, just for the moment. We believe that our kids stand on their own two feet, and that there might just be a little hope for fairness in their world, even though we know better.

Sometimes, we simply celebrate.

Schuyler joined her middle school band as a percussionist last year, and while she’s had her challenges and continues to have them, it has for the most part been a positive experience for her. She’s probably not going to be a percussion virtuoso, but there’s a lot that Julie and I remember from our own band days. Among the lessons we learned back then was that not everyone is going to be a great player, or even a good player. The important thing to realize about that, and it’s something that most band directors understand but a few very much do not get, is that a student doesn’t need to be a great or even good player to contribute significantly to the band, both as an ensemble and a community.

We encouraged Schuyler to be in band because we felt like if there was one place she might find her tribe amongst a diverse group of mostly neurotypical classmates, it could very well be in band. We’ve understood for a few years now that Schuyler feels compelled to find a place in that neurotypical world. I’m not convinced that it’s advisable as a goal, but it’s one that she has set for herself and which we feel compelled to help her with as best as we can. While I can’t say that she’s found a place where she is treated as an equal, band has given her a group of kids who care about her, and directors who encourage and support her, and more importantly, accommodate her and include her.

This weekend, Schuyler participated in solo and ensemble contest, playing a solo on marimba. The piece that was selected for her was of a challenge level appropriate to her abilities, and she worked hard on it. It was like anything else Schuyler does. When she was focused, she could play it note perfect. When she was distracted or anxious or tired or amped up or any of the other states of being that she runs through so quickly, like a lightening round on a game show, then the music slipped from her grasp. Going into the performance room to play her solo, we had no idea which way it was going to go.

It didn’t help that Schuyler asked us to come into the room with her while she played, but then was entirely distracted by our presence. We should have known better; we should have said no. We should have trusted that, given the chance to grab the moment and make it all her own, she would have discovered that she didn’t need us there at all. I make mistakes with Schuyler, and most times, they involve being more present than I probably should, more protective, less faithful to my belief in her abilities. It beats the alternative, I suppose, but still. It’s something that Julie and I both have to work on. We know that.

At one point, Schuyler looked over at us and smiled because she got through a rough spot unscathed. Naturally, when she looked back at her music, she was lost. She didn’t entirely recover, and fumbled badly on the last line. She stood in silence.

The judge looked at her. “That’s very good,” he said kindly. “Would you like to try the last line again?”

She smiled shyly and said yes, and played it flawlessly. When she was done, he asked her if she was nervous and then told her how well she did, and that he gets nervous all the time, and how it was a very big deal, the fact that she had the courage to stand up there and play for him.

I don’t know how much he knew about her before she stepped into that room, but it was clear that at the very least, he had surmised the short version. And when he told her how he admired her courage, I could tell he meant it.

When we left the room and went outside, we found the big list of names of students and when and where they were scheduled to perform. Periodically someone would come and post scores. A Division I would be awarded for the very best, and then all the way down to a Division IV. (I believe, anyway. I’m not actually sure if there’s a V; if there is, I’ve never seen one awarded.) We waited around for a while, but Schuyler was getting squirrelly and the hallway was becoming crowded. When we checked the board, we saw that the student before Schuyler had received a Division III. Suddenly, I didn’t think I wanted to wait right next to the board for her result to be posted. We stepped outside into the cool, clear morning air and just talked and waited. Schuyler tossed pebbles into a gutter. We tried to pretend we weren’t worried.

Julie and I took turns going inside to check the scores. After about twenty minutes I went in and saw that Schuyler’s score had been posted. I looked, then looked again, following the line very carefully to make sure I was looking at the correct rating. Then I stepped outside and called Julie and Schuyler to come in and see for themselves.

Schuyler had been awarded a Division I.

Sometimes we don’t ask too many questions. Sometimes we don’t pick apart the decisions made by the people in her life, or try to look too deeply into those processes. Sometimes we don’t need to hear how a judge might make a choice based on something besides technical perfection or demonstration of proficiency, but instead on something larger, more powerful, and less subjective. We don’t need to know what moved someone to do a kind thing for Schuyler, or to try to measure the exact thing that a positive mark might be recognizing. People make fun of the “A for effort” without realizing that sometimes, the effort is the thing. It’s not the often-mocked “everyone’s a winner” approach. It’s more an acknowledgement that for some, the effort really is Herculean, and the fruits of that effort deserve accolades.

So we celebrated. I pinned a medal on Schuyler’s blouse and took her happy photo. She may very well receive one of her own when she goes to school, but regardless, I wanted her to feel some recognition in the moment. The medal I gave her was one of my own from my high school days, when I performed in competitions and accumulated awards and made my self-important mark on the world as a trombonist, a mark that I thought would define me for the rest of my life.

Now I know better. I understand what it is I was meant to do with that life, and what accomplishments are truly worth celebrating. One of them was to help bring a little girl with a big monster to a place in her life where she could stand confidently in front of a judge and do her very best, and to show him what real courage and persistence is all about. I’ve gotten a lot wrong in my life, but I think I might be getting this one mostly right.

It’s worth far more than a medal, but that felt like a good place to begin. She earned it more than I ever did.

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“Our life is a series of moments. Let them go…”

I watched a not-bad movie last night, Now is Good, starring Dakota Fanning as Tessa, a teenaged girl dying of cancer and trying to live her life as fully as possible in the short time she has remaining. On of the most important relationships of the film is between Tessa and her father, played by Paddy Considine. Her desire to cram as much experience into her brief life makes him crazy; her impending mortality tears him apart. Early in the film, she explains to a radio interviewer that her father hasn’t accepted the inevitable as she has. She has made the decision to stop treatment, but he is still hopeful for a miracle. It is his obsession with protecting his daughter and his inability to completely accept her reality or to allow her to live her own life freely, albeit briefly, that sets up what is really the central conflict of the film. The possibility of a cure is taken off the table almost immediately, so there’s no mystery where the story is heading. But it’s still heartbreaking and real, watching the father who is haunted by what he sees coming for his daughter but which he is powerless to stop. He is deeply broken, and breaking even more as the story unfolds.

In the end, he falls apart, begging her not to go, or to take him with her. I watched this scene with a heavy heart. I got it.

Don’t get me wrong. I’m not equating dying of cancer with Schuyler’s condition. There is a chance, always a chance, that her polymicrogyria could still take her from us. It does just that sometimes. The last child with PMG that I read about who had died did so suddenly and unexpectedly after a history of regular but unremarkable seizures; he was Schuyler’s age. That’s a possibility that hangs over us, and of course I’m aware of it. All too aware.

But the fact remains that the chances of Schuyler’s polymicrogyria being lethal are remote, enough so that it can be pushed, if not out of mind, at least into the shadows most of the time. Schuyler’s condition does not carry an inevitable, looming death sentence. She’s not trying to squeeze a life into a short period of time. I’m not watching the calendar with dread; I’m pretty sure she’ll outlive me by many decades.

But the larger point, a father’s inability to go with his daughter into her own monster’s lair? That resonated with me powerfully. The older Schuyler gets, the more I can see the future she’s walking into, and the more obstacles I can see in her way. Her idiosyncrasies become less charming, her differences more isolating. In some ways she remains very childlike, in the way she still clings to us in public or in the toys and movies that she gravitates to. Her naivety can feel like a kind of purity of innocence, but it also sets her up for hurt from the world around her. And as she grows older, some hard, grownup truths have begun to take hold. She has become a little paranoid, a bit quick to decide that someone is staring at her or that a friend has turned against her or is talking about her behind her back.

And I stand, largely helpless, watching her move forward into that future, one that neither of us can see clearly but nevertheless fills us with trepidation. That worry once belong to her mother and me alone, but I think Schuyler is beginning to feel it, too. And as much as I want to protect her, as much as I’d give anything at all to make it easy for her or to join her, to go with her, that can’t happen. It is the fathers’ curse, to watch our little girls grow up and walk into a hard world without their hand in ours. For those of us with special needs kids, that curse feels dark and shadowy indeed.

But as the character in the movie reminds us, life is a tapestry, built from moments, some awful and some sublime, but all of them unique and the best of them genuine. As Schuyler’s father, the best times I have are the ones in which I can live in those moments. And then let them go.

What saps the spirit of special needs parents and advocates and person with disabilities themselves isn’t the fact that we’re fighting for things that are important, things that make a difference like basic human dignity. That’s easy, even ennobling in a way. The thing that breaks us down, bit by bit, is the way we fight the same battles over and over, like building sandcastles on the beach and hoping, foolishly, that next time, the tide will spare us.

It happened again today. I saw a tweet go by from someone on my feed, taking a cycling reporter to task for using the username “cycletard”. (I feel okay mentioning that without fear of looking like I’m encouraging harassment since she eventually changed it, which feels a little like progress.) I chimed in, and it went to the predictable places. She said that she didn’t mean it to be offensive, which was probably true enough. Then she gave some contradictory explanations for what she meant (it was French, but also it was a common term used among hipster cyclists, among whose proud ranks I guess she considered herself a member), her friends chimed in to her defense, I was called overly sensitive and PC and an idiot and a “misinformed zealot”, and asked if I would ban the use of other words like leotard. In the end, no one’s minds were changed, nothing much was accomplished, aside from the username being changed, and I think even that was simply a matter of her professional reconsideration of the wisdom of representing her employer with a name that was stirring up a little controversy.

A tempest in a teacup. Nothing to see here. Move along, and reset yourself, because I guarantee it’ll happen again tomorrow.

I don’t want to get into this particular issue again. Either you think it’s cool and funny to use that word, or you don’t. And furthermore, I understand the people who use it, in a way. I don’t have a great many regrets in my life, although I do seem to accumulate them as I get older and incrementally wiser. But chief among my regrets is how often I used that word in the past, casually and frequently and, perhaps worst of all, in my writing. That trend continued until as recently as 2006, when I was writing my book. I feel a great deal of shame for this. The thing I remember at the time, however, was how it felt to be told that the words I was using were insensitive, how defensive I became, and how very little I wanted to believe that I was doing something that could and did hurt others. Perhaps I really am overly sensitive now, with the zeal of the convert. Perhaps I am trying to atone for something, for everything. Maybe I just grew up a little.

I can tell you the thing that opened my eyes for good, however. It was the realization that my daughter knew that word, and knew exactly what it meant and exactly how maliciously it was intended when used. It was a shock because, well, we’d never introduced her to that word or what it meant. I think on some level we very intentionally didn’t expose her to it, with the desperation of every parent to protect our kids from emotional harm. All I know is that someone taught her that word, and they taught her to understand how vile a word it is and exactly how personally she should take it.

And so I advocate against it, in part to spare someone else’s kid from learning and, god forbid, self-identifying with it. But also in part because I realize now that I helped to keep that word alive, for years, and so it’s now my job to try to help kill it.

It’s a sandcastle, and the tide tears it down every night. Every time I rebuild it, it takes a tiny bit more out of me, but I’ll never stop. I owe too much penance. I care too much about the cost.