Moments

“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.