On forgetting myself in fatherhood
I originally submitted this piece to Open Secrets Magazine. If you enjoy it (even if you don’t), please check them out for more.
The team came by during early morning rounds, when the hallway lights were still dimmed and the night shift was only halfway gone. Our daughter was hooked up to long-term EEG monitoring, her head a tangle of gauze and wires. We were all just looking at her, watching her sleep through this deafening silence. A cough echoed in from the hall and one of the staff closed our door. Closing a door in a hospital is its own kind of diagnosis.
The neurologist scrolled through the results on a tablet, paused, and said, almost conversationally, “Her background looks terrible.”
I said, “So you’re telling me she’ll never pass a DOJ screening.”
The doctor blinked.
“What?”
“You said she has a bad background,” I said. “That’s going to be a problem for a background check,” and then, dramatically hanging my head, “there go our hopes for her getting a job with security clearance.”
The silence returned. Not a heavy kind like before, more of a recalibration while our team tried to get back on script. The doctor looked down at the tablet. I looked at my daughter, whose fingers were curled over her thumb the way they always did when she slept, a habit that had survived every medication change. The feed pump chugged.
The doctor continued with the results.
A few beats passed.
Then she stopped, looked up again, and said, “Wait. Actually… that’s hilarious.”
This was not the first time I had made a joke like that. After that admission, she would sometimes tell me (always politely, always at the end of an encounter) that I was one of the funniest parents she knew. I would thank her and resist the urge to tell her that I suspected she said that to many parents, the way doctors say, “You’re doing a great job,” when what they really mean is, I see how little control you actually have here.
Many people use humor in awkward situations to smooth something over. Maybe a social misstep or some other embarrassment. Something to clear the air when it gets thick with discomfort, you reach instinctively for a joke the way you might crack a window. Sometimes that discomfort belongs to you. Sometimes it belongs to the room. Sometimes it’s shared, but unevenly distributed.
In other words, we joke because we feel guilty.
This isn’t going to be an exploration of guilt, so I’ll offer a working definition and move on: guilt is the uncomfortable certainty that we are not all we could have been, not all we should have been. When I joked about my child’s EEG looking like a criminal record, it was because I felt awful. Because as a parent, I had failed at the one job parents are not supposed to fail at—keeping their children safe, intact, progressing along the expected arc of things.
I was not all I could be.
I was not all I should be.
See? Guilt.
But in many of the situations where that guilt gets offloaded through often dry, sometimes morbid, occasionally maudlin humor I am almost immediately served a second course. The joke I used to manage the original guilt is followed by guilt about delivering the joke itself. Guilt for saying something so dark. For not bearing the moment properly. For not suffering well.
The joke collapses in on itself and becomes evidence of my lacking.
This, I think, is bound up with a widely held belief that is rarely stated outright. It is the belief that those who suffer are responsible not only for carrying their suffering, but for carrying it nobly. We praise the parent who remains gracious. We admire the ones who speak softly, who never seem sharp or strange or inappropriate. We tell stories about strength and resilience and grace under pressure, as though grief were a performance and composure the yardstick for measuring this danse macabre.
So when I make a joke to ease my own suffering, I fail that standard. I am reminded, again, that I am not all I could be. That I am not all I should be.
Double guilt.
And yet, it isn’t always guilt that fuels these jokes. Parents (and really, most people I’ve talked with) will tell you they joke in situations like this because it helps them cope. Because the weight of the moment is too heavy to carry straight on. Because burnout has stripped away the energy required for decorum. Because humor offers a brief exit ramp from a reality that feels otherwise inescapable. Or simply because this is the voice their life has trained them to speak in now. ‘You’re funny!’ ‘Thanks, it’s my trauma.’
All of these explanations are true in their own way. But all of them place humor as a reaction against crisis (or lysis in our case), as something that negates, distorts, or briefly erases what is happening. Humor as disappearance. Humor as denial. Humor as a way to step sideways out of the room.
I don’t think that’s the whole story.
I think humor can be something else entirely.
I think it can be one of the clearest expressions of Hope.
Shattering the Sacred
We often talk about the work of hope as if it were something always dignified. Grand. Upright. The kind of thing done with steady hands and a calm voice. Hope, in this telling, is clean with eyes forward, jaw set, doing what must be done without complaint. It is noble and, increasingly more important, it photographs well.
But more often than not, hope looks nothing like that.
More often, hope is clumsy. It slips. It misjudges the angle. It trips over its own good intentions. There is a slapstick quality to it that rarely makes it into the stories we tell afterward. A kind of physical comedy born of being too close to the ground to maintain any illusion of grace.
In a previous essay, I described hope not as wishing for water, but as digging a well. The metaphor has held up, mostly. But what I didn’t say then is how frequently that digging goes wrong. How often the shovel hits something unexpected. How often you strike not water, but a mess—an unmarked pipe, a bureaucratic fault line, a pocket of something foul-smelling and expensive to clean up.
The work of hope, in practice, is full of these moments. You set out to be what I called “love with its sleeves rolled up,” and end up soaked, muddy, apologizing to someone on the phone who keeps transferring you to another department. You fill out the wrong form. You miss the deadline. You bring the wrong supplies to the appointment. You do everything with sincerity and still manage to look ridiculous.
Humor is the controversial admission of this fact. It is the acknowledgment that sometimes, while digging the well of hope for our children, we don’t look brave, we look foolish. We get covered in literal or metaphorical filth. We stand back, stare at the hole we’ve made, and laugh. This is where humor begins to do something important.
Hope, when it appears in places like the PICU, or beside a hospice bed, or mid-conversation with a friend whose child will not stop seizing, is often treated as a solemn obligation. A sacred task. Something to be handled with hushed voices and appropriate reverence. We imagine hope as a kind of moral excellence, best embodied by marble statues of ancient philosophers or saints who have already passed through suffering and emerged polished on the other side.
But these lofty versions of hope miss its true location.
Hope does not live in the abstract. It does not hover above the room. It lives here, in the present moment, among IV poles and medication schedules and conversations that start with, “I’m sorry to tell you…” Humor brings hope back down to this level. It returns seriousness to the ground. A chuckle in the middle of a conversation about procedures doesn’t cheapen what’s being discussed but rather reanchors it. It reminds us that we are still here, still embodied, still subject to gravity and timing and bad coffee.
Humor, then, is not a distraction from the work. It is one of the ways we stay in the mud of this precious and precarious life without getting swallowed by it.
There is another way humor grounds us, one that matters just as much. It reminds us that our children are human.
Disabled children are too often rendered symbolic. They become aspirational angels or inspirational infants, regardless of their disposition or age. They are praised for enduring. They are held up as lessons. They are spoken about in tones that smooth over the roughness of actual personality. Humor disrupts this. A laugh, especially one shared and especially one the child participates in, cuts through the sentimentality. It insists on personhood.
A joke does not erase the seriousness of what our children face. It refuses, instead, to turn them into abstractions. It says: this is a human life, subject to boredom and annoyance and surprise and absurdity, no matter how long the discharge packet is. And all of us in this room with them are not above it, no matter how many hours of sleep you’ve lost or how long the alphabet soup is after your name on your lab coat.
And once the sterile sanctimony of caring for and being cared for has been shattered, hope can begin to do something else. It can become shareable.
Reality is no longer something observed from behind a two-way mirror, with others watching us bear it well. The glass breaks. Everything becomes face to face. And now begins a different kind of work. The work of knowing who to hand the shovel to, who can laugh with you at the mess, and who understands the joke not as a failure of reverence, but as an invitation into the work itself.
The Currency of the Dark Joke
Once the glass has broken and hope is no longer something performed behind a pane of observation we begin to notice something that was true all along: we were never alone in this. We are always involved in a world that is already happening and we are connected to the lives of people who are already inhabiting it. The moment you plant hope in your actual, present circumstances you have planted it in shared soil. It takes root not just in you, but in the network of relationships you are already tangled up in.
Hope, by its nature, is communal.
And if hope is communal, then humor is one of its currencies.
Jokes are exchanged the way money is. They are offered tentatively, slid across the table, sometimes pocketed, sometimes refused. They can be borrowed or stolen. They can inflate or lose value depending on the room. Some jokes buy you time. Some buy you trust. Some cost you more than you expected. Like any currency, they only work if there is some shared agreement about what they mean and what they’re for. This is where the so-called dark joke comes in.
The humor that emerges among parents of severely disabled or medically complex children is often raw. Unpolished. Seemingly inappropriate for the circumstances. It rarely announces itself with disclaimers or asks permission. It arrives shaped by exhaustion, proximity to loss, and a familiarity with the limits of good news. To an outsider, it can sound callous. To the wrong audience, it can land like a breach of etiquette.
But to the right one, it functions as a signal.
Someone who laughs at, or at least doesn’t recoil from, your deathbed joke is doing more than appreciating your wit. They are telling you, in a language older than words, that your credit is good here. That your money is accepted. That you are not going to be audited for impropriety. And sometimes, if they laugh back or add their own line, you even earn interest.
In this way, humor doesn’t merely decorate the community hope needs but helps form it. It establishes who can stand in the mud with you without pretending the mud isn’t there. Who understands that the joke is not a denial of seriousness, but proof of engagement. Who can roll their sleeves up alongside you without demanding that you first become someone more palatable.
This realization usually comes after a period of searching.
Boy, do we love a label.
One of the first things we did, like so many others, was go looking for our people by name. We typed our daughter’s diagnosis into search bars. We followed hashtags. We found groups and threads and accounts filled with people living parallel lives. And we did find people, some of the best people. Generous, knowledgeable, sincere.
But over time, it became clear that shared experience creates a category, not a community.
Diagnosis can tell you what happened to someone. It can’t tell you how they live inside it. It can’t tell you how they make meaning, or what keeps them steady, or where they locate hope when things refuse to improve. And one of the quickest ways to learn that difference, to discover who your people are and who, despite every overlap on paper, are not, is through humor.
Because humor does not generalize well.
A joke only works if it lands somewhere specific. It demands a shared orientation to the world. When it fails, it fails loudly. And when it succeeds, it does something more precise than sympathy or solidarity ever could. It tells you, unmistakably, that you are speaking the same language in the same room at the same time.
That, too, is hope at work.
A Particular Way of Knowing
Humor didn’t just tell me who my people were.
It also told me who I was not.
I used to scroll. Page after page. Reel after reel. TikTok after TikTok. Parents with children carrying the same or adjacent diagnoses as my daughter making jokes to trending audio about ventilators, seizure meds, feeding tubes, hospital bags that never quite made it back to the closet. The comments would stack up beneath them: So relatable! THIS. I’ve never felt more seen.
And I wouldn’t get the joke.
It wasn’t offense or judgment. I wasn’t scandalized by the content or clutching pearls on behalf of seriousness. I simply didn’t get the joke. It passed over me cleanly, like a reference from a show I had never watched. Despite the overlap in ICD codes, despite the shared vocabulary of consults and procedures and acronyms that don’t translate well at dinner parties, I wasn’t the audience being addressed.
That moment of realizing that I wasn’t who the joke was for was clarifying in a way I hadn’t expected. Just as my humor signaled who was inside my circle, the humor of others let me know whether I was inside theirs. This wasn’t a moral judgment. I didn’t think those jokes were wrong, or shallow, or irresponsible. Many of the people making them were doing something generous: using humor to lighten the load for others who lived with similar rhythms and constraints. The fact that I didn’t laugh said far more about me than it did about them.
It meant my way of standing inside this life was different. And that difference mattered.
Because my humor—like my hope—was my humor. It was not interchangeable. It couldn’t be standardized or exported or scaled. It might be informed by abstractions or universal themes or the borrowed language of philosophy and science, but it was ultimately built out of the bricks of my own days. Out of the sounds of our home at night. Out of the way time stretched in our living room. Out of the particular weight of my daughter’s body when I lifted her, and the particular fear that accompanied loving someone whose life would never be predictable.
Hope that strayed too far from those particulars risked becoming something else entirely. A performance for others. A posture. A glittering wish that hovered above the lived-in world instead of taking responsibility for it. Humor functioned the same way. When it lost contact with the ground of experience, it stopped being a form of engagement and became something closer to noise.
That was the tension I kept running into online. Not a tension between optimism and realism, but between abstraction and embodiment.
Humor, I realized, wasn’t just expressive.
It was epistemic.
It revealed what kind of knowledge someone trusted. Whether they knew this life from the inside or only from its outlines. Whether they were making sense of it through repetition and recognition, or through a sustained nearness to what refused to resolve. Neither was inherently better. But they were not the same. And they did not always speak to each other.
This was where responsibility entered the room.
Because you couldn’t force someone to understand a joke any more than you could force them to live your life. When their jokes didn’t land, or when mine landed with a thud, it gave me information about my orientation and my limits. About what I was trying to do with humor in the first place. I could ignore that information. I could harden into resentment or superiority. Or I could listen. But either way, I was choosing.
And once humor became something I tried to enforce—through repetition, through escalation, through the subtle pressure of come on, it’s funny—it stopped functioning as hope. It became coercive. The joke that had once opened space now demanded compliance. Laughter became proof of understanding. Silence became a failure of character. And I knew I didn’t want my humor to work like that.
I wanted it to remain a way of knowing that stayed accountable to the life I was actually living. One that acknowledged the darkness without trying to make it palatable. One that didn’t require everyone else to arrive where I was standing in order for me to keep standing there.
Not every joke was for me. And not every joke of mine would be for others. That wasn’t a problem to be solved. It was a fact to be respected. And learning to respect it, to let humor remain particular, situated, and freely received, turned out to be another way hope learned how to tell the truth.
The Laugh That Moves
Not every joke counts as hopeful.
This is not an argument for indiscriminate acceptance, for pretending that every attempt at humor deserves a charitable reading simply because life is hard. Hope is not passive. One of its essential features is movement. It leans forward. It refuses to leave things exactly where it found them. Humor that does not move its teller or its audience is not hopeful, no matter how loudly it insists on being received that way.
Some jokes are designed precisely to keep things in place.
They rely on stereotypes. On cruelty dressed up as honesty. On the familiar gravity of punching down and calling it realism. These jokes do not open space; they narrow it. They chain their targets to a single, distorted version of reality and invite the rest of the room to laugh at the containment. Nothing shifts. Nothing breathes. Whatever tension is released comes at the cost of someone else’s immobility.
That kind of humor mistakes stasis for truth and hope cannot live there.
Hopeful humor always works in the present tense of real life. For me it often uses the materials of missed sleep, bad coffee, long nights punctuated by alarms and numbers that matter more than they should. It does not require denial or distance. On the contrary, it insists on things ready at hand. But it also refuses to treat the present as a prison. It acknowledges reality without embalming it.
There is movement built into it. It moves us away from the static world of concepts to the real world, it moves within a community, it moves within myself.
Even in the hardest places, even for parents whose days are structured around constraints that do not loosen, hopeful humor carries this quality. It describes the journey without pretending the path is paved. It makes clear that feeling so well expressed by Seneca: Not much voyaging, but much being tossed about. The joke that works is the one that recognizes the tossing without insisting that this is all there will ever be. Or that the tossing itself is what defines my life in its entirety.
At its height, humor can lift you clean out of the muck. A well-timed laugh can interrupt grief mid-sentence, dry tears that have not yet decided what they are about. But the humor that sustains is rarely the kind that erases the present. It is the kind that moves you through it. It makes just enough room.
Enough room to see the hurt without becoming it. Enough room to hold what is heavy without dropping it on someone else. Enough room to step forward carrying the marks of what has been endured rather than pretending nothing has happened at all. When used, not to overwrite suffering nor to dwell forever in the dark, but to move forward without erasing what it has moved through—this is humor as hope.
The Last Laugh
Like a magician’s trick, humor does not survive being fully explained. The more insistently we pull it apart the less of it remains. Something essential disappears. Not because it was flimsy, but because it was never meant to be handled that way. Humor really works best while it is happening.
So this is not an exhaustive account of what humor does in the lives of caregivers. It is not a taxonomy. It is certainly not prescriptive. These are not rules for what you should laugh at or when or how. It is a series of observations, gathered in rooms where living and laughing and dying and crying exist in a way that abstraction can’t hold. What I am describing here is not about humor so much as it is spoken from inside it.
And from inside it, humor begins to look less like offloading guilt and more like commitment.
Because the humor I’ve been tracing is not passive. It does not float above suffering or wait politely for circumstances to improve. It shows up in the middle of what is unfinished and unresolved. In this way, humor expresses hope itself as an active, difficult choice to remain in motion.
Humor commits us to the present moment. It refuses the fantasy of distance. It uses what the body, the room, the mess, the timing, the people. A joke does not solve the problem. But it can open a path through it. It can shift a stalled conversation. It can turn observation into participation. It can make action possible where paralysis had been setting in.
Humor is also accountable. It demands attention to who is in the room, to what they carry, to what is being risked in the saying. In this way, humor trains a kind of radical responsibility. You don’t get to outsource it. You don’t get to hide behind intention. You offer the joke, and you live with what it does.
And because it must be received to exist at all, humor is irreducibly communal. It builds connection without flattening difference. It allows shared work without requiring identical lives. It gathers people around a solution-free orientation; around a way of standing inside uncertainty together, sleeves rolled up, eyes open.
And that, as I have come to understand it, is what hope actually looks like.
By keeping us here, together, and moveable, humor, like the hope it expresses, refuses to let suffering have the final word. Humor does not deny the darkness. It insists that even here there is still room to act, to respond, and to choose one another again, and again.
Those who hope will always have the last laugh.
Our Little Kartoffel 