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Connections | Magazine

Where will my son’s journey take him?

For many parents raising children with disabilities, it can be frightening to imagine what’s around that bend in the track.

Globe staff photo illustration

Every Sunday at 4:19, my 9-year-old son and I race down the outbound platform of the commuter rail station. In the summer, our sandals slap against the concrete as we sprint. In the winter, puffs of our breath form and disappear behind us. My son hates wearing coats — the zippers and tight cuffs trouble his body — but I carry one for him, just in case the bitter air changes his mind this time. (The answer so far: no coat.)

We won’t board this train. Instead, my son needs to be at the very end of the platform, alongside the engine as it thunders into place. We wait there, stunned every time by the noise, the vibration of that massive steel machine. In any other context, loud noises assault him — sometimes even my toothbrush bothers his ears — so I am always amazed that he can tolerate this clamor. He points out what makes each train distinctive (the size of the windows, the number of double-decker cars), and he is lit with pleasure. He takes a video of each train, so later he can savor the replay countless times. Then the engine heaves the rest of the cars down the track, clacking by us, picking up speed. We watch until the last car vanishes, and for a moment we gaze at the emptiness where the train used to be.

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Then we bolt for the other side — down the platform, up the stairs, across the pedestrian bridge — because the inbound train comes soon. My son leads — run, Mommy! — turning back to make sure I am completing my part correctly each time. The sameness of our visit makes something right within him. I suppose rituals soothe most of us that way; for my son, the ritual is a requirement.

Since we are here every Sunday, some of the conductors recognize us. They are a kind tribe, nodding in greeting, giving a thumbs-up. I used to wonder if my son’s fascination came from imagining himself in that role. Such forecasting seems unavoidably wired into being a parent: We picture the child who is good at math as a future scientist, the articulate one as a lawyer. And so for a while, I pictured conductor or engineer. But in truth, when I consider the tracks on which my son’s life will move forward, I have no idea what we’ll find around the next bend. No parent really does, of course, but for many parents raising children with disabilities, that curve in the road is frightening; it can be so much harder to imagine what destinations the world will make possible.

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I know now that greetings from the conductors are not what my son is here to collect. It’s just the machine itself that he wants, in all its predictable majesty. The inbound engine pulls in, and we witness its loud arrival and departure. Then my son turns away happy, something within him answered.

On the drive home, he scrolls through his library of videos, his fingers touching the screen as if he could join the train itself. Sometimes from the back seat he asks me: Mommy, why do I love trains so much? We try out possible answers: The vibrations in the core of his body? The fact that he knows what will happen each time? And then the question drifts away, unanswered. I am, finally, fine with that. There will be other answers I’ll need to help him find: guiding him toward a future that will work for him, building that future with our bare hands, if necessary. For today, though, what matters is just his love itself, the sheer deep persistence of it. My job is not to make him declare a reason for that love or to diagnose one myself. My job is simply to race alongside him, helping him make his connection.

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Karen Heath teaches writing at Harvard University. She lives with her husband and son in Massachusetts, near a stop on the Fitchburg Line. To submit your story for consideration for Connections, e-mail your 650-word essay on a relationship to connections@globe.com. We do not respond to submissions we won’t pursue.