Our Little Kartoffel

Tag: faith

  • Lent at the Bedside

    On being the season you are in

    This post was originally written during the months of March ans April as we held vigil at our daughter’s bedside.

    “You really ought to give it a try.”

    Someone was texting me about some kind of fast they were doing. A detox they called it. No something or other for forty days. It was going to help them reclaim their mornings, they said. They were going to start returning to themselves. Get back to what’s really important.

    I blinked and nodded at the phone, as if they could see, in the way you nod when someone is talking about some hobby you were deep into 15 years ago but no longer keep up with. They were speaking a language I once knew, using words I once used. As I scanned their messages I could even remember the feeling of believing I could shape a season of my life through sheer will. The feeling that I could step back, look at my life, and just decide to do it differently for a while.

    I read the texts as they came in. It wasn’t the time to share my own reality, this moment was for them, but their words sparked a recognition in me. I do something like that every day. Not in forty-day increments. Not with a declared intention or a clean start date. But every morning, in the accumulated weight of small decisions that don’t announce themselves as decisions, I choose this life. I choose to stay. I choose to show up at the bedside, make the calls, read the signals, carry the knowledge that no one else in the room is carrying quite the way I carry it. My fast isn’t from things like chocolate or screens; it’s from the illusion that I can control the outcome.

    I can’t simply decide to carve out a contemplative morning the way someone without a medically complex child can. The context is different. Their fast is a choice to step back; mine is a choice to stay put. What I have is not the polished, curated choice of someone redesigning their life from a position of varied options. It’s something different, something smaller, less persiflage, more gravity. It’s the choice that gets made in the middle of things, not before them.

    It is Lent as I write this. The three pillars of the season could be articulated as reflection, discipline, and service. Much as I wrote about Advent, these concepts belong to anyone who has had to live where certainty runs out. They are practices you vow to take up deliberately, proving to yourself across forty days that your impulses don’t have to run the show.1 Caregiving already is these three things. Not because it imposes them automatically, not because caregivers are virtuous by default, but because this life keeps presenting the choice, again and again, in circumstances where the choosing is genuinely hard. This life presents an omnipresent opportunity to engage with reflection, discipline, and service, they find you, you don’t have to go looking for them.

    The practice isn’t in the taking up. It’s in the not putting down.

    Reflection

    The common conception of reflection is appealing in its tidiness. You carve out silence. You sit with your thoughts. You practice what some have called the ‘view from eternity’ (sub specie aeternitatis for the curious). Imagine looking down at your life from a great distance, seeing it whole, and understanding yourself from that angle. The goal is perspective. The method is commonly a deliberate withdrawal from noise.

    I don’t carve out silence. Silence finds me, and usually not gently.

    It arrives at all hours of the morning, when the pulse oximeter alarm or the concentrator alarm or one of the many other alarms goes off. And then, after I’ve repositioned her and watched her numbers climb back into the safe range, doesn’t go off again. Then I’m left sitting in the half-dark with nothing between me and my own mind. It arrives in the car ride home after a hard appointment with more questions than answers, in the pharmacy line that somehow just filled up the instant before you got in line, in the thirty seconds between when one task ends and the next one hasn’t started yet. It arrives, I’ve noticed, whenever the doing stops, even briefly. Which means it arrives constantly. It just arrives in the spaces I didn’t schedule.

    The question isn’t whether the silence comes or how I can rearrange my schedule to fit in a 15-minute breathing exercise before the kid wakes up. The question is what I do when it does. And I think the choice lives here, in whether I reach for the phone, flip on whatever streaming service I haven’t given up on yet, run the mental list of what needs to be done tomorrow, or whether I stay quiet. Just for a moment. Let whatever is there surface.

    That’s harder than it sounds. The silence that finds a caregiver tends to carry questions that aren’t comfortable. What do I actually believe about what is happening? What am I doing this for? Is this sustainable? What does it mean that this situation is even happening at all? These are not questions you can answer and set aside. They are the kind that take years, and ask themselves over and over, and over and over. They don’t resolve so much as deepen. Sitting with them and choosing not to flee, is the practice. Not the scheduled reflection, but the repeated choice to remain in the unscheduled kind.

    This is a kind of attention that can only be learned under duress. Not the focused attention of achievement, but the open attention of vigil. The way you use your useless hands to hold something you love that is broken and you cannot fix. The practice is staying. Staying is the choice.

    Contemplative traditions point at exactly this. The carving-out is scaffolding for people learning to bear stillness. Caregiving removes the scaffolding. Whether you bear it is not determined by whether you planned to. The opportunity to choose is here, you don’t get a say in that. What you get to choose is whether you do it awake. Whether you do it intentionally.

    Discipline

    Fasting, in its received understanding, is about voluntarily constraining yourself. You remove the easy comfort, the dopamine shortcut, the reflexive reach for relief. Presumably to prove to yourself that your impulses don’t run the show. The logic isn’t wrong, by enduring a little chosen hardship you can build the interior framing that helps you endure unchosen hardship better.

    And in this is laid open to us the structural irony of caregiving. That you can’t fast from the hard parts. The hard parts are not optional in the same way that social media or chocolates are optional. You can only abstain from the vigilance, the physical labor, the sustained attention to medical complexity that doesn’t take weekends in such a way where you have to alter what your definition of a ‘good parent’ is. There is no feast to return to at the end of the forty days. In a life where you are choosing to be present for your totally dependent child the fasting is the baseline.

    But I want to be careful here, because this is where the story can tip into something false. The idea that caregivers simply endure, that the difficulty is something that happens to us rather than something we are continually deciding to be inside of, is something I disagree with. A life where I simply have no choice but to care for the Kartoffel is not what I experience. What I experience is that every day, the hardship presents itself again, and every day there is a moment, sometimes very small, sometimes not small at all, where I choose to meet it rather than flee it, resent it, or merely survive it.

    The flight I’m most tempted by is not physical. I’m not going anywhere. The flight is interior. That would be the slide into bitterness, the slow calcification of grievance, the transformation of sacrifice into debt that someone owes me. Doing so would be the path of least resistance. The discipline, the real discipline, is in not taking it. In refusing to let the weight become a ledger. In choosing, without ceremony, without demanding witness, without anyone handing me credit or expecting a reward for it, to carry this without turning it into a case against the world.

    This is where the ‘superhero’ platitude fails us, and where the ‘you would do it too’ response falls short. When people say, ‘I can’t imagine how you do it,’ they are projecting a kind of exceptionalism that I don’t feel. I am not a superhero. I am not better than the parents of typical children. But neither am I just ‘like you.’ I don’t believe everyone is cut out for this life, and I don’t think the ‘you would do it too’ sentiment honors the specific, brutal reality of what is required here.

    The truth is simpler and less flattering. I am not doing this because I am special. I am doing it because it is what I believe to be the right thing to do. And yes, through a thousand small repetitions, I have learned how to stand in this specific fire. But that skill is not the reason I stay; it is the result of having stayed. It is not a superpower; it is a discipline forged in a specific climate. I am not ‘better’; I am continually adapting. And that adaptation is not a gift I was born with, but a practice I return to every day.

    This is not the same as saying, ‘It’s fine.’ It is frequently not fine. The discipline doesn’t require feigning otherwise. What it requires is something more deliberate. It requires the choice not to let the difficulty become the whole story. To hold it alongside the small dailiness of other things, the particular person at the center of it, the fact that choosing this is still choosing something.

    The version of discipline you find in self-help books or from digital gurus says you must prove to yourself that you control your impulses. The way I view caregiving says something stranger and more specific; you must prove to yourself, every ordinary day, that you are here on purpose. It is a shift from control to intention. That this life is not merely what happened to you. That is the fast. Not from comfort, but from the abdication of authorship over your own story.

    Service

    Of the three pillars, service is the one most people project onto caregivers from the outside. You are so giving. What you do for her is such a gift. I receive these observations with something I’ve learned to keep off my face. They are not wrong, although she would disagree with the ‘gift’ part. The tension arises from the fact they are describing the surface of something without touching the inside of it.

    The standard vision of service is beautiful, yet expansive. You volunteer your skills, mentor someone younger, show up in your community, reduce your ego by recognizing how much you need others and they need you. The assumption embedded in this vision is that service is chosen from some sort of surplus. The belief that you have enough, and so you give some away. Service as overflow.

    I want to say something honest about what has happened to that impulse in my caregiving life, because I don’t think it gets said enough. The desire to be of service gets narrowed. Not eliminated—narrowed. The primary relationship, the daily total care of my daughter, uses the majority of what I have. What remains for the broader civic project of giving is genuinely less than I would like. There are weeks when a friend could use a check-in and I don’t have it in me. There are seasons when the idea of mentoring someone or investing in their growth, feels like being asked to lend money I don’t have.

    As much as I might want to be involved with helping someone other than the Kartoffel, sometimes the honest answer is ‘Not right now.’ I am already at the edge of my capacity. To pretend otherwise and stretch toward a broader civic generosity that I don’t currently have the reserves for is not virtue. It’s a performance of virtue, and it costs more than it gives.

    For a long time, this felt like failure. The evidence for that failure, I told myself, was found in the gap between what I believed about service and what I could actually sustain. But I’ve come around to thinking the gap is not a moral deficit but rather it’s a resource constraint; the well is not inexhaustible.

    What I’ve had to deliberately choose is the mindset that the narrow channel is a real service. I’m not choosing this as consolation or as a way of throwing up my hands and saying “well, at least…” but as a genuine account of where my giving goes. To one specific person, with one specific set of needs, in a sustained and total way that most forms of civic engagement don’t require or resemble. I choose to see that clearly rather than through the distorting lens of what service is ‘supposed’ to look like.

    And there’s something else I keep choosing, which is to pay attention to this life carefully enough to find words for it. My experience is not universal, I haven’t met anyone yet whose experience is, and so I would not speak for others. But what caregivers carry tends to go unexamined and unarticulated. It remains invisible to those outside the culture of it, sometimes even to those inside it. To name it in earnest, to write it down in a way that might reach another parent sitting in a waiting room somewhere wondering if their experience is real, this is a form of service I can still manage. It gives as it goes. It costs something and replenishes at the same time. That particular economy feels sustainable in a way that the other version doesn’t, at least right now.

    Being the Season

    The season of Lent is built around anticipation. The tradition holds that forty days of preparation are moving you toward something. You practice in order to arrive. The discipline earns an after.

    I’m not sure caregiving has an after in that sense. There is no terminus at which the reflection can stop, the discipline be retired, or the service concluded. The choice doesn’t get made once and then honored automatically. It will get made again tomorrow, and the day after, and the day after again, in the same unglamorous circumstances, without a finish line in sight.

    What shifts is not the structure of your life but your relationship to the choosing. It happens slowly, with effort, and not on any schedule. Whether you experience each renewed decision as evidence that you are trapped, or as evidence that you are still here on purpose. Whether the weight feels like something that has been done to you, or something you are doing.

    The difference between a burden and a chosen weight is not how heavy it is. It’s whether you keep choosing to carry it. And the remarkable, largely unacknowledged fact of caregiving is that most of us keep choosing. Not because we have no other option, we have options, and we know what they cost, and we choose anyway.

    We are now in the liminality that is the night before Easter. I have always loved the feeling of movement in this part of the dark. Only now I am asking:

    Am I in this season or am I this season?

    Until next time, stay safe, stay kind, and know that you are appreciated.

    Cheers,

    [kartoffelvater]

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    1. Theologically there is more to Lent that this, and we can have that conversation if you want to, in a different space. ↩︎

  • A Chosen Community

    On the Difficult, Beautiful Things that Bind Us

    Hallo Kartoffelkumpel,

    It’s that time of year when the world gets very loud about a certain kind of love. The kind that comes wrapped in cellophane and tied with a perfect bow. It’s hard to ignore the sudden rush toward the bright and the polished. Things have been heavy and beautiful in equal measure lately, as they often are in our corner of the world, so it’s got me thinking about those of us whose devotion doesn’t fit on a greeting card. Those whose love is measured in milligrams, nightly vigils, and an endless calendar of choosing to be present. Before we get into it, I just wanted to check in and remind you that the “less than radiant” work you’re doing is the realest thing there is.

    Love is the most dangerous and transformative act a human can commit.

    Not the flashy kind you see in movies, but the real stuff, the kind that shakes you up and keeps you going when the days get long. The kind that doesn’t come with a bow on it, the kind we live every day with our children who don’t fit the world’s tidy little boxes. I’m thinking of the Kartoffel, her rare self, a constellation of quirks and seizures, and how loving her isn’t some oil painting you’d frame on the wall. It’s an obscured, muddy, fierce thing, rooted deep in the marrow of us parents and caregivers who know the drill of meds, waits, and the nights that stretch too long. This love doesn’t ask for an “I see you.” from others. It just is as it is. Solid as the earth, wild as a storm, and bigger than the whole sky.

    We become practical souls, don’t we? We chart the hours, measure the doses, build small routines to keep the chaos from spilling over the lip of the day. You don’t always get to map out this path; but you can find who you are inside it, staying long after you might have chosen to leave. You stay without conviction, often without clarity, because leaving would cost more than you can afford.

    In this narrow space, your attention undergoes a revolution. You stop chasing the shadows of who she might have been or tallying the milestones she won’t hit. Instead, you learn the discipline of the gaze—looking at who is actually in front of you, even when the picture refuses to come into focus. It is a steady, rhythmic “Here you are.” This isn’t a love that fixes or fills gaps; it is a love that makes enough room to breathe. Sometimes the breath is shallow, sometimes it’s borrowed, but through your fidelity, you realize you are no longer bracing for a change. You are simply remaining, attending to the human that just won’t let you go.

    Mind you, it’s a reckoning too. Loving like this breaks you open, strips away the bits that crave a nod or a “well done.” You don’t ask, “What’s my reward?” because the question falls flat in the face of it. Let that go, and you’re not boxed in anymore, you’re spilling out, woven into them, part of a bigger dance. It’s an agony, sure, but a beautiful one. Our children feel it too, unshackled from the roles we might pin on them. They’re not here to prove anything, not to us or the world. We see them in their stumbles, their sparks and spasms and say,

    “I’m here. You’re enough.”

    This love doesn’t lift us out of it, does it? It takes the slog—the diapers, the chairs, the endless rounds with doctors—and refuses to let it become empty. I think of us, cradling tiny humans who might never toss a ball or whisper “thanks,” and the world shrugs, calls it a pity. But we know how little that word used that way explains. Stripped of the usual trappings, this bond binds us without promising that either of us will become more than we already are. A hand on a cheek, a shared silence, what remains when there’s nothing left to say.

    This less than radiant but relentless love stays close to where the shadows pool. You stay when the seizures hit, when the news cuts, when you’re so weary you’d trade your soul for sleep. You’re close, unsteadily saying, “I’m here.” It’s raw, unglamorous, and it holds. Through the muck and the ache, it’s the thread that keeps our tapestry from falling apart.

    So, what does it build, this love (is build even the right word)? Space. Not for us to mend, but space for the mending to take place should it arrive. It ties us to each other with a knot we must choose to keep retightening, hoping to outlast the days that would unravel us. In a life that can feel like a storm with no end, it plants meaning where the ground’s gone soft. And here’s the gift: it frees us all. They get to be, just as they are, even when others would keep the strings attached. We learn to carry the weight without feeling the guilt of not being enough. We love, and that’s the whole of it.

    But this isn’t a solitary vigil. If you look closely at the architecture of this life, you’ll see the same light burning in windows across every zip code. We may be a ragtag crew of carers, but we are a community. Not because we share the same struggles, or the same diagnoses, or treatments, or anything else outside of us. We are a true community when we have agreed to love the same difficult, beautiful things.

    We are bound together by what we have chosen to hold dear in the dark.

    If we acknowledged that, and really saw the collective strength in our unsteadiness, the hard days wouldn’t vanish, but they’d carry a weight worth bearing. It would be a ripple that starts in the puddles of our own backyards and ends by shifting the world’s axis just a hair.

    It’s not easy, I know. Takes everything you’ve got some days to live fuller, to hold closer, to brush against something bigger than the daily grind. It sees us peeling back the layers, starting fresh when we’re anything but, stretching past ourselves into the wild unknown.

    So, do we keep at it? Let it shape us, our families, this life we’ve got?

    Damn right we do. It’s a love that is ours to claim.

    Always has been.

    Until next time, stay safe, stay kind, and know that you are appreciated.

    Cheers,
    [kartoffelvater]

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  • What We Mean by Tragedy

    On the Fierce, Fragile Beauty of Lives That Defy Resolution

    “Time, which sees all things, has found you out.” —Sophocles

    What if tragedy isn’t the opposite of dignity, but one of its deepest forms?

    When I call my disabled daughter’s life a tragedy, I don’t mean it’s pitiable. I mean it’s vast. I mean it defies easy resolution. I mean it reveals something true about being alive: that we are fragile, that we suffer, and that this doesn’t make us any less worthy of love. In fact, it might be the very thing that binds us.

    But “tragedy” is a word that makes people flinch. In disability discourse, it’s often seen as a slur, as something said by those who don’t understand, those who haven’t stayed up all night suctioning lungs or waiting out seizures. So we counter it with mantras: My child is not a tragedy. Our life is not a tragedy.

    I understand the impulse. I’ve said those words too. They were my shield. My insistence that she was more than how the world saw her. And she is. But lately I’ve started to wonder: what if we lose something important when we throw the word away?

    Literature has long given us another meaning of tragedy. Too often, we mistake the tragic for the sentimental. We want stories of suffering to leave us uplifted, we want catharsis without consequence. But this view turns pain into a kind of theater, something that performs for our edification. Especially now, when lives are streamed and suffering can be shared as content, we are trained to feel about pain without doing anything with it. We confuse feeling moved with being present. But real tragedy isn’t built to inspire. It’s built to hold what can’t be tied up. It’s not there to cleanse the spirit, but to stretch it. It asks more of us, not less.

    Unbearable Insight

    “How dreadful the knowledge of the truth can be
    When there’s no help in truth.”
    — Sophocles, Oedipus Rex

    In Sophocles’ Oedipus Rex, the tragedy doesn’t hinge on weakness, but on knowledge. Oedipus is noble, capable, determined. But his relentless pursuit of truth leads him to unbearable revelation: that he himself is the source of the plague afflicting his city, that he has killed his father and married his mother. The horror is not in what he did, but in the moment he knows. Tragedy, here, is clarity. Not punishment, but insight. What if our children’s lives ask that of us too, to see clearly, even when it hurts? To witness the full scope of their experience, not just the parts that reassure us? Tragedy doesn’t come from weakness, but from the revelation of something uncontainable.

    The Space Between

    “I know indeed what evil I intend to do, but stronger than all my afterthoughts is my fury, fury that brings upon mortals the greatest evils.”

    — Euripides, Medea

    In Euripides’ Medea, tragedy emerges not from simple villainy, but from unbearable contradiction. Medea is both a grieving mother and a woman who commits the unthinkable. She is betrayed by Jason, abandoned in a foreign land, stripped of home and identity and yet, she is also the one who enacts vengeance so devastating it collapses the moral order. What makes Medea tragic is not just the horror of her actions, but that we feel her pain even as we recoil. She is victim and perpetrator, tender and terrifying, powerful and powerless. Her grief cannot be comfortably resolved. Euripides refuses us the moral simplicity of heroes and villains. Instead, he gives us a world of terrible beauty where suffering twists the soul and love becomes unbearable.

    I think of this when people rush to frame my daughter’s life as either a story of resilience or a cautionary tale. These narratives, even when well-meaning, flatten her experience. They miss the way she lives in contradiction. She is utterly dependent, and yet full of presence. She cannot speak, yet expresses a will that shifts the mood of a room. Her body is fragile, and yet she has survived countless crises. Like Medea, her story resists tidy categories. And that resistance is precisely what makes it tragic. Not in the sense of despair, but in the sense of magnitude. She lives in the space between extremes. And she invites me to live there with her.

    Stripped of Logic and Speech

    “Never, never, never, never, never.”
    — William Shakespeare, King Lear

    In King Lear, tragedy unfolds through disillusionment. Lear, once a powerful king, demands public affirmations of love from his daughters. When the one who loves him most refuses to flatter him, he banishes her. Slowly, Lear is stripped of power, status, illusion. He goes mad. But in that madness, he begins to see the world as it truly is. He recognizes suffering, recognizes love. The heartbreaking image of Lear cradling Cordelia’s body is the climax of this recognition. “Never, never, never, never, never,” he says, holding her. No redemption, no lesson. Just loss, laid bare. When I hold my daughter during one of her seizures, knowing I can’t stop it, only be there, this is the Lear moment. Not hopelessness, but exposed love. Not weakness, but naked fidelity. Raw grief, stripped of logic and speech, mirrors my recognition of love within powerlessness, how nothing is resolved, and everything is still held.

    A Haunting

    “Definitions belong to the definers, not the defined.”
    — Toni Morrison, Beloved

    In Toni Morrison’s Beloved, tragedy lives in memory. Sethe, a formerly enslaved woman, is haunted—literally and emotionally—by the daughter she killed to spare her from being returned to slavery. Beloved returns as a ghost, as hunger, as ache. Morrison doesn’t sentimentalize this pain. She lets it haunt the reader as it haunts the characters. Sethe’s love is wild, desperate, impossible. There is no tidy moral, no healing arc. And yet, through this pain, Morrison gives us something sacred: a mother who refuses to let her child’s suffering be erased, even at the cost of her own peace. This, too, resonates. I don’t want to sanitize my daughter’s story. I don’t want to tell it only in hashtags and victories. I want to let it haunt, not as terror, but as truth. Not to terrify, but to make space for the full, uncontainable weight of her life. A haunting that resists closure, reminding me that some pain must be remembered, not packaged, and that haunting itself can be a form of care.

    Monstrosity as Unacknowledged Pain

    “I am malicious because I am miserable. Am I not shunned and hated by all mankind?”
    — Mary Shelley, Frankenstein

    Then there is Mary Shelley’s Frankenstein, a story so often misread as a simple horror. But Shelley’s monster is not monstrous by nature. He is sensitive, intelligent, and yearning. What he wants most is connection. What wounds him is rejection. He is denied community, denied kindness. The tragedy is not in his creation, but in his abandonment. And it is this abandonment—via the world’s refusal to witness his pain—that drives him toward rage. In some ways, this mirrors how the disability world is often treated: as either heroism or horror, with nothing in between. When we only show our children overcoming, we risk Frankenstein’s fate: we deny the reality of their rejection, their complexity, their unfulfilled needs. We fail to look directly at what the world refuses to hold. This reframing of monstrosity as unacknowledged pain, helps me draw the connection between the disabled body and the world’s refusal to face suffering without distortion.

    Tragedy as a form of Sacred Clarity

    “It is only as an aesthetic phenomenon that existence and the world are eternally justified.”
    — Friedrich Nietzsche, The Birth of Tragedy

    Finally, Nietzsche’s The Birth of Tragedy argues that true tragedy arises when the Apollonian (order, reason, form) and the Dionysian (chaos, passion, suffering) are held in tension. Our culture tends to prefer the Apollonian. We like order, progress, neat story arcs. But my daughter lives on the edge of the Dionysian. Her seizures, her pain, her unmeasured time, they defy form. And yet they are beautiful. Fierce. Sacred. Nietzsche believed that Greek tragedy, at its peak, didn’t resolve the world’s suffering; it revealed it, and found something sublime in the revelation. When I say her life is a tragedy, I mean it in this sense: it is not less than life as others live it. It is more. Too much for tidy narratives. Too much for order alone. Suffering doesn’t have to be overcome to be meaningful, that tragedy can be a form of sacred clarity.

    Tragedy offered audiences not moral lessons or heroic victories, but a space where the full contradiction of existence with its beauty and cruelty, its vitality and decay, could be revealed and held. The tragic stage did not offer redemption. It offered recognition.

    I think of this often as a parent. How quickly we reach for structure, for narrative coherence, for control that might shield us from what feels unbearable. Even in our resistance to the medical gaze that reduces our children to diagnoses, we may build new facades crafted not of charts and probabilities, but of positivity mantras and curated joy.

    But our children do not live in tidy categories. They wail and tremble and laugh in the same hour. Their bodies resist the symmetry we’re taught to call health. Their lives, like all lives, are shaped by forces beyond their choosing. And still they are. Still they burn, brilliantly, if unevenly, and always gloriously.

    When we use tragedy as a purgative, we distance ourselves. We declare a life “less than,” and feel good for noticing. But when we use tragedy as an affirmation, we join. We admit the pain not as evidence of inferiority but as part of the fabric of living.

    So no, I don’t say her life is tragic because it is lesser.

    I say it is tragic because it is bigger than what the world knows how to hold.

    It is a life made of pain and joy, confusion and clarity, dependence and agency. It is not easily framed. It is not easily shared. But it is deeply and stubbornly real.

    And maybe that’s what tragedy gives us: not a reason, not a resolution, but a place to stand when the world makes no sense. A form big enough to carry what cannot be fixed. My daughter’s story is not only an inspiration. It is not an emotional cleanse. It is not a platform. It is a tragedy in the oldest, deepest sense.

    And I am here, in the wings, listening to her life ring out.

    Just letting it echo.

    Cheers,

    [kartoffelvater]

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    Buy us some ground of despair

  • The Birth of a Tragedy

    (One of the many) Complicated Truths of Disability Parenting

    I reluctantly welcome the dawn.

    I am unsure whether facing the day would be easier than surviving the night. I watch it leaning over our kitchen sink while waiting for the kettle to boil, thinking about contradictions. How the same sky can hold both storm and sunbreak. How we can feel both crushed and lifted by the same moment. These tensions have been my quiet companions lately, teaching me that truth rarely arrives in neatly labeled packages.

    In about a month we will come up to our Pachyversary1 and so one of those tensions that have filled my mind recently is that surrounding tragedy.

    When Positivity Becomes Another Cage

    I used to post photographs of my daughter’s hospital stays with uplifting captions. I documented her medical procedures and framed them as challenges to overcome, moments of strength. I became fluent in the language of using whatever term was currently accepted as the term that might finally release our children from judgment.2 These terms became amulets against the darkness, against judgment, against what I feared to feel.

    What I never posted: her face contorted in pain that medication couldn’t touch. The way certain procedures made her body rigid with fear, eyes searching mine with questions I couldn’t answer. The medical trauma that doesn’t resolve into neat narratives of overcoming.

    It took years to understand that in my fight against a world that too easily dismisses disabled lives, I had become another system of control, one that policed how my daughter’s life could be perceived, even by me.

    By resisting ever viewing her life as a tragedy I had inadvertently reduced her in another way, by denying the profound reality of her suffering alongside her joy.

    This is the paradox many of us navigate as parents of disabled children. We can become the very forces we’re fighting against. In our desperate love and advocacy, we sometimes create new constraints around our children’s full humanity.

    What if we let our children’s lives be tragic, not to pity them, but to see them fully?

    The Digital Performance of Joy

    Scroll through any disability parenting forum, and you’ll see them—the mantras we whisper to ourselves and shout to the virtual world:

    • “My child is not a burden.”
    • “I choose joy.”
    • “We wouldn’t change a thing.”
    • “Our life is not a tragedy.“

    These phrases appear beneath hospital bed photos adorned with fairy lights, alongside videos of therapy breakthroughs, beneath milestones celebrated months or years later than expected. They are both shield and declaration.

    I understand why we reach for these words. They were born of necessity, crafted in response to generations of exclusion. They emerged from institutional hallways where children were hidden away, from genetic counseling sessions heavy with assumption, from playground sidelines where stares lingered too long.

    The digital landscape has amplified these voices of resistance. Instagram accounts showcase smiling children with feeding tubes decorated in whimsical patterns. Facebook groups celebrate adaptive equipment as extensions of personhood. TikTok videos set medical appointments to upbeat music.

    But beneath these sunlit stories, the shadows still pool. In private messages and quiet conversations, we sometimes confess the parts that don’t fit neatly into our public testimonies. The marriage straining under the weight of the decisions we have to make. The sibling who feels perpetually overlooked. The early morning moment when pain can’t be soothed and we find ourselves on the bathroom floor weeping from exhaustion.

    And yet even when we do share difficult moments, I’ve noticed they’re almost always framed: “The hard days make the good days worth it.” “Without the dark there would be no light.”

    In these formulations, suffering is permissible, but only as a means to joy.

    This asymmetry reveals that maybe we’ve internalized the very framework we’re fighting against. When suffering can only exist in relation to joy, but joy needs no such relationship to suffering, we inadvertently reinforce the idea that our children’s lives are fundamentally tragic unless actively redeemed.

    To be clear: the resistance remains vital. The world still needs reminding that disability does not negate personhood, worth, or quality of life. But perhaps there is room for a more expansive truth, one that doesn’t require us to choose between tragedy and triumph, between acknowledging suffering and celebrating joy.

    And perhaps we can look to our children themselves, who so often inhabit this paradox with more grace than we do. They live what what we sometimes forget—that acknowledging pain doesn’t diminish the capacity for joy, that suffering and meaning can occupy the same space.

    Finding Wisdom in Tragedy

    There’s research I encountered years ago, and used frequently in my practice, long before I became a father. Studies showed that positive affirmations like “I’m a good person!” work wonderfully…just as long as we don’t actually need them. The cruel irony is that when we truly need affirmation, when we’re genuinely struggling with negative feelings about ourselves, these forced positive statements can actually make us feel and function worse.3 The research suggests that if the purpose of any coping strategy is to avoid feeling a challenging emotion or thinking an upsetting thought, to wipe out a painful memory or look away from a difficult circumstance, in the long run, the results will very likely be poor. In fact, these coping strategies have been shown to actually trigger the very negative emotions they are trying to inhibit!

    I see this dynamic play out in disability parenting circles. Mantras such as “Our life is not a tragedy,” and “We wouldn’t change a thing,” function beautifully when we’re already feeling (at least mostly) secure in our choices and circumstances. But when we’re drowning in medical debt, when our relationships are strained to breaking, when we haven’t slept more than two consecutive hours in months, these statements can become another burden, another standard against which we measure ourselves and find ourselves wanting.4

    Psychological rigidity (that desperate clinging to a single narrative) predicts anxiety, depression, trauma responses, and numerous other struggles.5 It undermines our ability to learn, to connect, and to adapt to changing circumstances. Research has shown that people who allow themselves to fully experience horror during traumatic events often develop less severe trauma symptoms than those determined not to be horrified by the same experience. There’s something about allowing the full truth of our experience—whatever it is—that creates resilience, not in spite of acknowledging difficulty, but because of it.

    I wonder sometimes if our disability parenting community’s positivity mantras, though born of necessary resistance, might function similarly. There isn’t direct research on this specific phenomenon, but the parallels are compelling. When we insist “This isn’t tragic” in moments that contain genuine tragedy, are we creating the very psychological rigidity that makes us more vulnerable, not less? When we rush to frame every obstacle as a blessing6 in disguise, are we inadvertently telling our children that their suffering must be justified to be acknowledged?

    People who experience suffering as a result of their child—whether disabled or not—often feel guilty for naming it as such. Over time, that guilt calcifies into shame, as if acknowledging their own suffering somehow diminishes their love.

    To say “this hurts” feels dangerously close to saying “I wish my child were different.”

    But being open to the tragic vision isn’t choosing suffering over joy. It is the recognition that you can love your child regardless of whether the result is suffering or joy.7

    Embracing the Tragic Vision

    There was a day last summer when my daughter was admitted to the hospital for the third time in two months, I sat in the impossibly heavy vinyl chair, held her hand through the side rails, and allowed myself to think: This is not what I wanted for her. This suffering serves no purpose. This is, in some fundamental way, tragic.

    And something shifted. In allowing the tragic to exist without transformation, I saw my daughter more clearly than I had in the endless years of positive reframing. I saw her not as a symbol of resilience or as a challenge to the system, but as herself, as a person experiencing something difficult without narrative obligation. Of course, she is resilient, and she does challenge the system, but through no insistence of mine.

    This is what Nietzsche8 understood about tragedy that we sometimes forget: it doesn’t reduce the human to a single dimension of suffering. Rather, it expands our vision to include the full spectrum of experience without hierarchy, without insisting that one aspect justify or redeem another.

    There is liberation in this kind of seeing. When I allow space for the tragic alongside joy, I free myself from the exhausting work of this constant reframing.

    I free my daughter from being the protagonist of an inspiration narrative she never consented to.

    Last November, we went to the beach. One of her favorite places despite the sensory challenges. The day held everything: moments when the texture of sand caused distress, moments when the sound of waves made her body rigid with tension. It also held moments of pure delight with her face breaking into unguarded joy as the sea breeze kissed her cheeks.

    In one particular moment she was lingering between laughing and crying, her eyes welling with tears even as her mouth curves upward. I didn’t take a photo of it. Its message would get misconstrued on an inspiration page. It doesn’t tell a clean story.

    But it tells a true one. In that complex and contradictory truth, a truth stubbornly resistant to simple narratives, I find something far more valuable than comfort.

    I find my daughter, complete.

    I’m not intending to deny joy its own place, but the inspirational joy narrative has enough voices championing it. I’m also not trying to romanticize suffering. I don’t think we need to love our suffering but rather more fully love those that are suffering.

    The tragic vision offers us a widening of perspective. Not a surrender to darkness, but a more honest relationship with light. It offers the possibility that we might love our children not despite the full complexity of their lives, but because of it.

    It’s not that joy and suffering can coexist because you’ve decided to let them, it’s that they already do coexist and all you have to decide is whether you’re willing to stop sacrificing one trying to chase the other.

    Cheers,

    [kartoffelvater]

    Did this newsletter resonate with you? Reply with your thoughts or share your own story. And if you know someone who might need these words today, please forward this along.

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    1. This is what we call the date she received her diagnosis. It’s a cute name we give to one of our darker moments in the hopes that it will make the memories easier to live through. It’s doesn’t really work. ↩︎
    2. The storied history of what society calls its disabled members is long, cyclical, often cruel, and absolutely not going to be explained in the footnote of a newsletter. The search for and inevitable enforcement of the ‘right’ term is often more tragic than the term itself and speaks to the heart of the Apollonian/Dionysian conflict that I touch on in this post, which will also absolutely not be able to explain in a footnote. You’ll just have to read the book when it comes out. ↩︎
    3. Wood, J. V., Perunovic, W. Q. E., & Lee, J. W. (2009). Positive self-statements: Power for some, peril for others. Psychological Science, 20, 860–866. Not free, I’m sorry. The pay-walling of knowledge makes me at times weep peer-reviewed tears. Get one of your academic friends to use their library access for you. ↩︎
    4. That pit you get in your stomach when you realize you haven’t seen a parenting friend in your feed for a while is something unique to the disability community. I know because I’ve asked. Every time I’ve asked someone outside of the community what they think when they haven’t seen a lot of activity from a friend on social media the response is something along the lines of, “They’re just taking a break,” “They’re working on themselves,” or some other indicator that they are otherwise not worried about them. When I ask the same thing of other parents of medically complex kiddos the response is always, “Something’s wrong.” ↩︎
    5. There are quite literally tens of thousands of articles published about this, with more being published every week. If you are curious (or skeptical!) I suggest searching “psychological flexibility” or “experiential avoidance” or “acceptance and commitment”. Here’s one you can read for free from just a few years ago that shows a balanced approach. ↩︎
    6. It’s ‘The obstacle is the way,’ not ‘The obstacle is a blessing.’ StoicBros come at me. No, really, I’d love to discuss. ↩︎
    7. Quiet shout out to those who, while wishing to remain anonymous, have lent me their eyes and ears while writing on this sensitive topic. ↩︎
    8. This was originally a much longer essay with an entire section dedicated to historical and literary understandings of ‘tragedy’ with particular interest in Nietzsche’s The Birth of Tragedy and how it contrasted with Aristotle’s Poetics in our understanding of the function of tragic art, see footnote 2. I’ve been listening to y’all though and the feedback is telling me these newsletters are already too long. If you’d still like it I can make it a separate post, or again, you’ll have to wait for the book (this might not make it until the second book though). ↩︎