Mid-afternoon sunlight has a way of flattening a room. It’s not the gold of morning or the softness of evening. It’s just an indifferent brightness that makes everything look exactly as it is. Emma’s been restless for a few days now, the kind of restless that makes you start watching the numbers on the monitor a little closer. I’m reluctantly packing the go-bag. I’m not trying to manifest a hospital stay, but not packing would feel like a kind of denial we can’t afford. It’s got the usual stuff in it: spare yankauer suction sets, rescue meds in case we need them en route, a change of clothes. And that damn charger I’ve been looking for.
Across the room, the BiPAP hisses just so. Emma keeps shifting, and the seal breaks, and the machine exhales into the room instead of into her. Her oxygen saturation dips, and I reach up to adjust the mask, and she resettles, and it seals again. The feed pump is running slower than usual, too, because she hasn’t been able to keep anything down. It chugs along at a cadence I’m not used to, off by just enough to notice, like a song playing a half-step out of key.
I pull out my phone to check if the doctor’s office has responded yet. They haven’t. But there, just below the unread message, is an ad. Something about pizza, or maybe a gadget—the gift every dad will love. I don’t fully register which. Father’s Day is apparently this month. And it would seem the rest of the world is preparing to celebrate something I’m not sure I know how to think about right now.
Fatherhood and legacy. It’s a pairing so familiar it’s almost invisible. What does a father leave behind? A name. A set of values. Maybe a trade, or a way of fixing things, or an odd way of telling a joke that outlives the person who told it. Somewhere in the back of my mind is an image of an older man, work-worn hands, watching someone younger drive away in a car he taught them to drive.
I think of my own father’s hands, steady in a way mine still aren’t, fixing whatever needed fixing, never needing to search for a tutorial before starting a repair. I think of the wider cultural reel, too, the one we’ve all seen so many times we don’t notice it anymore. Driving lessons. Graduations. A daughter in white, a father offering his arm. Grandchildren, eventually, who carry forward some piece of you without ever being told to. People cherish these images because they offer a comforting sense that what you love might outlast you.
Having a child on hospice makes it difficult to leave that assumption unexamined. It has a way of making you ask questions before they’re fully formed. They arrive sideways, usually while I’m doing something else like adjusting a mask, picking up toys the cousins left out, watching a number on a screen settle back into range, reading an invitation to a friend’s child’s birthday. The question, when it finally arrives, is simple enough. It usually sounds like, ‘What kind of father am I?’ and it always comes with the reminder that I will likely outlive my daughter.
I’ve written those words—outlive my daughter—before, yet it still doesn’t look quite real on the page. It’s like a fact that sits in the corner of the room, present but unaddressed. But Father’s Day has a way of dragging it back into view. Because if legacy is what flows from a father to a child, if it’s the thing that continues through them, then what happens when that future is uncertain? What, exactly, am I supposed to be building toward?
For a while, I lived inside that question. But while waiting for it to answer itself, images would seep into my mind, unbidden, of the very grief I was hoping would resolve on its own. Not vague pictures, but clear, sharp images in my mind of things I will never get to share with Emma. No ballet recitals that needed to be filmed. No embarrassing photo montage at her wedding. No late-night phone call about a bad date or a good job offer. No version of Emma who one day tells me about her life instead of the other way around.
I lived inside this grief-fueled chimera for years. And then, especially since last year, a different question started to form alongside the grief of it all. Not “What will Emma carry from me?” but “Who have we become because of each other?” I used to think I was Emma’s father in the sense that I came first, and she came from me. But the truth is, we made each other. She didn’t just receive care; she shaped the person giving it. Somewhere between learning how to change a g-tube and differentiating the distinct rhythms of Emma’s excitement and her dystonia, I became someone I hadn’t built. I would not be the father I am without her anymore than she would be the daughter she is without me. Maybe nobody becomes themselves in a vacuum. Maybe identity is less like a thing you build, and more like something that happens between people, in the space where lives overlap. It doesn’t go up, it goes out; it doesn’t tower, it encircles.
I think about the nurses who stood, many nights, as close to the line between Emma and death as my wife and I did. The nurse who taught me to read her body before the monitor caught up. The other father who, years ago, told me it was okay to grieve a future while still loving a present. I think about her specialists, who fought systems as fiercely as they treated illness. Her therapists, who learned the language of her body. The hospice team, who walked into an impossible situation and met it with gentleness. And the other parents, found in waiting rooms, hallways, and late-night messages that became friends.
None of these people were in the life I had planned for us. And yet here they are because Emma exists and needs them. I wonder if, like me, they need her too?
Who would these people be if Emma had never been born? Who would I be? I don’t know.
For most of my life, I assumed identity worked like something you built through your own choices and effort. However, caregiving doesn’t leave much room for the story that we build ourselves through individual effort. It reveals how much of us is made through relationships. Perhaps that’s true for every parent and child. Hospice simply removes the illusion that that relationship was ever one-directional. Children do not merely inherit us. They create us.
Before Emma’s diagnosis, and if I’m being honest even for a few years after it, I thought about fatherhood the way people often talk about legacy: as a process of building something that would outlast me. A monument, in other words. Something durable.
But monuments are solitary things, with a single plaque naming their builder. Nothing about Emma’s life has felt solitary.
Everything she has given us has happened between people. Between us and our child. Between nurses and our family. Between strangers who became friends because they found themselves carrying versions of the same impossible thing.
The longer I live inside this reality, the harder it becomes to imagine legacy as a monument. Monuments are built once and left standing. What I see instead is a fire.
I tended plenty of fires before Emma. You learn things, when doing it for real. You learn that a fire needs attention more than it needs fuel, that a log thrown on carelessly can smother as easily as feed. You learn that embers hold more heat than flame, that the quietest-looking parts of the fire are often doing the most work. You learn that ash isn’t waste; it banks the heat for whatever comes next.
In caregiving, the work often looks like suctioning, repositioning, refilling a food bag at 3 a.m. But that is the fire. A fire isn’t owned. You don’t build it once and walk away. You tend it, feed it, sometimes for years, sometimes with very little to show beyond the light it casts. People gather around it without anyone deciding who’s allowed to be warm. They leave carrying a little of that heat with them, into other rooms, other relationships, other fires they’ll go on to tend themselves. The fire isn’t inherited by and continued through any one person. It continues because enough people, for enough time, kept feeding it.
The legacy of my fatherhood, I’m starting to think, isn’t permanence. It’s participation.
Back in the room, the light has shifted slightly—still flat, still afternoon, but a little less harsh than before. The BiPAP seal breaks again, and I reach over without quite thinking about it, and it seals, and Emma settles. The feed pump keeps its off-kilter rhythm. The go-bag sits by the door, finally packed. Whatever that ad was selling—the gift every dad will love—it wasn’t going to help me with the only question that actually mattered: what does it mean to leave a legacy when the person you most wanted to leave it to may not be the one who carries it forward?
But maybe that question was never quite right to begin with. The fire isn’t me, and the fire isn’t Emma. It’s the thing that happens between us. And between everyone who has ever adjusted her mask, sat with us in a waiting room, answered a midnight message, or learned to love more fully because she was here.
I don’t know what Emma will carry forward, in whatever way she’s able to carry things. But I know what she’s already given—to the nurses, to the therapists, to other parents, to me. The fire is still burning. And, for at least a little while longer, it’s mine to tend.
I don’t know what fatherhood will look like, without Emma. The embers are hot. Tending will transform. Heat may dissipate, but it does not disappear.
I started writing this on an afternoon that felt like it might tip into something worse. It did. A few hours after I wrote that last line, we used the go-bag.
We’re home now. The light in Emma’s room this afternoon is doing that same flat, indifferent thing. The go-bag is packed again, because it always is.
Stephen Hager goes by his second middle name (he has three), Bud, because it’s easier to remember and baristas never misspell it. Along with his wife he is a caregiver for their 8-year-old daughter, Emma, who has pachygyria, a rare neurological disorder. He believes in taking an active approach to advocating for his child and others like her. To this end, he sits on various advisory councils at Children Hospital of Orange County (CHOC), volunteers on consulting and directing boards for various non-profit centers and lends his writing skills where he can. Experiencing a lack of support for parents of medically complex children, Bud founded a support group through CHOC focusing on parent-to-parent interaction. He is also a professor of psychology and has a small private psychotherapy practice.