Or in other words, can you be good without needing to also feel happy about it?
The house is holding its breath again.
Or maybe it’s just me. Her breathing has met her vent at its usual rhythm of 16 cycles per minute. A soft, synthetic sigh that cuts through the brown noise, but it’s the silence between the breaths that’s the loudest thing in the room. It’s that specific, pressurized hush that only exists in houses heavily modified for survival. It feels like the air has thinned, like I’m standing on a mountain peak where the oxygen is too scarce or too precious to chatter on about the old stories I used to tell myself. And yet chatter I will…
I’ve been lying here for an hour.
Aimlessly staring at the ceiling, trying to untangle a knot. When I was younger I used to be pretty good at undoing knots. Other kids would always bring me their yo-yos whenever the strings would get tangled up. Tonight though, this particular knot happens to be between my heart and my head.
Who am I becoming in this?
Not the father I planned to be. That man is gone, buried under layers of insurance denials, medication schedules, and the terrifying, beautiful weight of a child who cannot hold herself up. I don’t miss him, not really. He was a stranger anyway, a fantasy of sunlit driveways and training wheels. But I’m not sure who has taken his place.
Someone told me the other day that I’m “so strong.” They said it with that bright, manic smile people wear when they’re terrified of the dark. They want me to be strong. They want me to be the oak tree that stands unbowed. At the very least they want me to think that they think I am strong like the oak. But I don’t feel like an oak. I feel like a spiderweb, trembling in the draft, knowing the wind is coming, knowing the threads will tear, and still, somehow, weaving.
And that’s where the question starts to itch.
If I am not happy does that mean I am doing this wrong? It certainly seems that way based on the reactions I get when I give an honest response to, “How are you?” If my life is objectively a tragedy, if the horizon is ruined and the air is thin, what’s the point? To choose joy and do what you can, cutoff whoever you need to, walk away from whatever you must, in order to be happy would seem to be the answer. But if all of that, if the word “happy” itself feels like a lie I’m telling myself to keep from screaming, can I still be a good person?
We are taught that goodness and happiness are married. That if you are good, the universe will eventually reward you with peace, with joy, with a life that makes sense. Can you, then, be profoundly, deeply good in the midst of a life that offers you no joy? What if the only thing left to do is to be good because there is so little joy?
I think about when we have to wash her hair in the sink. The grey adhesive from some hospital stay that won’t come out. The smell of solvent and the warmth of her scalp under my fingers. We scrub. We rinse. We do it again. We don’t do it because it makes us happy. It doesn’t. It’s tedious, exhausting, and often heartbreaking. We do it because she is here. Because she is ours. Because it is the right thing to do.
Is that enough? Is that the only thing that matters?
I feel a strange fear rising in my throat. Not fear of the future, or the next seizure, or the next bill. Fear of the possibility that I am wrong. That maybe I am just deluding myself, trying to find a philosophy to justify the pain. That maybe there is no “higher excellence” in this, just a slow, grinding erosion.
But then I look at her. She’s asleep, her chest rising and falling with the help of the machine. She looks so small. So fragile. Our lovely round baby girl has gotten so skinny. And yet, there is a dignity in her sleep that is almost a question. One that I don’t understand how to answer. I don’t have the words for it. I just know that the old language of “blessing” and “silver linings” has cracked and fallen away. I’m standing in the ruins, and the air is thin, and I’m trying to figure out how to breathe without pretending the sky is blue. Maybe that’s all there is. Just the breathing. Just the doing of the right thing, even when it hurts. Even when it doesn’t make me happy. Which makes me think we need to recalibrate the way we use the word ‘happy’.
When people talk about happiness they usually mean smiles, laughter, that warm fuzzy feeling. And they take for granted that this is the way things are supposed to be, that hardship and suffering are aberrations that must be relieved or diminished in order to get back to being happy. But how can that version of happiness be the natural state of things when so much of my life is not…that? I think there needs to be a reckoning that happiness is not our default condition, it isn’t a destination you arrive at, and it’s not a commodity you get. It is something that blooms out of a life lived being a good person. And the Good must come before the happiness.
I tell myself I’ll write this down later. When the sun comes up. When the glue is washed out. When I have a word for this feeling. Who am I kidding, the sun is already here, there is always more glue, and there are never the right words for things.
For now, I just hold her hand.
Until next time, stay safe, stay kind, and know that you are appreciated.
Cheers,
[kartoffelvater]
Thank you for reading. For those of you coming back, or for finding your way here for the first time—I’m so glad you’re here.We wouldn’t be here without you. Every bit of support helps and we appreciate it more than words can say!
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 Ithis season?
Until next time, stay safe, stay kind, and know that you are appreciated.
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.
We wouldn’t be here without you. Every bit of support helps and we appreciate it more than words can say!
I’ve written before about resilience as a net instead of an oak, about how the Kartoffel taught me that yielding is not weakness but the very material of strength. What follows are some further thoughts. Some heavy, some humorous, all held together by letting go.
We are told to be strong.
To bounce back.
To weather every storm with steel in our bones and silence stitched across our mouths.
But resilience, as I’ve come to know it, is not forged in silence. It’s not a virtue earned in isolation or an emblem of self-sufficiency. The old story we inherit is clean, almost cinematic. I witness something very different in my daughter on the long nights when her breathing grows uncertain. She does not resist the failing rhythm. Instead she softens into it, limp, trusting, entirely surrendered to the support around her: the mask, the steady hands, the voices whispering her name through the dark.
Nights like these teach me endurance is rarely a solo fight. It is the trembling circle of us holding her, and her allowing us to hold.
What if true endurance isn’t forged of metal at all? What if it is a delicate trembling net, or a low murmur passed hand to hand?
Or the patient way the moss on the brick in my backyard cradles the memory of this season’s rain long after the downpour has gone. After all, it doesn’t rain here much.
I once admired the solitary figures standing rigid against the gale. Now I seek out those who reach, who allow themselves to come gently undone, trusting the hands that will gather the pieces. There is an almost holy dignity in consenting to be held.
We so often tell survival as resistance. We push harder, refuse to yield, stand unbowed.
Yet so much that lasts in this world endures precisely by bending, by twining, by leaning without shame. The vine does not conquer the tree, it curls around it, drawing life from the very thing it needs.
What if survival is less the trials of a solitary will singing out and more like the harmony found in a chorus? Needs spoken and met, just enough, again and again and again. What if fragility is not resilience’s enemy, but the very soil in which it takes root?
Even now, some days I catch myself stretching into the posture of the oak. I stand alone, straight-backed, self-contained, appearing unmoved.
But it is the oak that splinters when the wind howls hardest. The willow leans with the gust. The spiderweb shivers and repairs. The mycelium with its soft threads weaves through the damp earth.
.
Some mornings I wake feeling composed entirely of thread.
How I wish it was the taut, purposeful kind twisted into rope. Alas it is more often like the stray filament that clings to your sleeve after restless sleep, soft and half-unspooled, unraveling not as if looseness was its original design.
We dismiss “barely holding it together” as defeat when really it is more of a miracle that we are managing to hold any shape at all, threading one shaky breath into the next hour, one tenuous stitch after another.
My daughter’s days, poised always on the edge of unraveling, have become an instructor in the art of staying soft when instinct screams to harden, staying open to the world even when every nerve begs to close the door.
Certain mornings her body simply forgets to hold its own warmth. Others, it’s as if her swallow reflex vanishes entirely. No predictable cadence exists anymore. What we have to offer is the feeding tube, the suction, the gentle tilt to one side. She blinks slow acknowledgment. And yet in fleeting instances, of which we’ve had a few recently, her mouth curves into that smile and her eyes light up at us as if greeting old friends.
The tenderness she carries is forged within these lapses, not lessened by them.
She has become a vessel veined with fine cracks across every curve. Light pours through those same lines brighter, warmer, and more insistent than I ever believed a fragile form could contain or release.
Where once I measured strength by unbroken surfaces now I wonder if fracture belongs to the very shape. What if the work is not to forbid the cracks, but to craft a life spacious enough to cradle them and let something luminous pass through?
The image I keep circling is the spider’s web. The spider never pleads with the wind to quiet. She constructs knowing full well the threads will tear.
A web is a living scar that remembers how to mend.
.
Years ago, probably early on a Tuesday, I had a moment when I wanted to hide. The morning had come with deceptive sunlight promising a warmth it never delivered. Sleep had long since abandoned me. I was brittle in that particular way where every gentle word, every offered kindness, scraped like sandpaper.
While connecting her feeding tube, my hand trembled and sent the syringe clattering to the floor. Formula bloomed across my shirt in a slow, pale milk stain, seeping under the clamp like an accusation that refused to hurry.
Heat climbed behind my eyes. Not from the spill itself, but from the sudden, ferocious wish to vanish. To stop being needed in this relentless, microscopic way. To escape the endless catalog of details required to keep one small life tethered to the hours.
In that instant I longed to be the father who steadies training wheels on a sunlit driveway, shouting encouragement as she wobbles forward.
Not the one who kneels in the dim hours to empty the suction canister, measuring what her lungs could not clear.
And then shame arrived.
Instant. Sour.
A metallic tang that seeped between my teeth and settled there, heavy and unswallowable. First guilt for having done this particular thing, but then shame for being the kind of person who does something like this. I’m not talking about spilling the formula. I’m talking about being the kind of person who not only just imagines a different life, but who wishes not to be in the one he has.
I have never not wanted my daughter in my life, but at that moment I did not want the work of her.
I folded in on myself and fell to the floor beside her bed, formula still damp on my shirt, and let the tears come, hidden, or so I thought. When I lifted my eyes, she was looking straight at me. Wide-eyed. Calm. Simply present. Bearing witness without judgment. Who am I kidding, of course she was judging me. But not for crying. Probably for the particular glasses I keep in her room. Big chunky black frames.
Judgment on my fashion aside, in that gaze I realized something small and enormous: she has never required an unshakable father. She requires only the one who remains. Who stays in the room when every instinct pulls toward the door. Who does the right things for her not for what they return, but because they are the right things to do. And I am learning, slowly, sometimes heartbreakingly, that this is all any reward ever was.
.
Each dawn I gather what the darkness scattered. I reattach, re-knot, re-begin. This ordinary labor feels, increasingly, like its own sort of prayer.
There are hours when the only possible act is nearness. When no remedy exists, no balm suffices, and all that remains is the plain, unadorned fact of being there.
To sit beside suffering you cannot halt can feel, in the moment, like inadequacy. Yet perhaps it is the opposite. Perhaps this bare presence is hope and love taking their earliest, most elemental forms. There is unexpected power in remaining exposed. Unarmored. Unprepared. Simply present. A face held steady toward another, offering nothing more or less than witness.
We equate strength with choices, with paths forward. Yet life so often contracts to a single narrow corridor. The real question ceases to be “What can I fix?” and becomes “Will I stay, knowing I cannot?” This undefended staying, this porous, unguarded proximity is a courage seldom honored. It wears no badge of motion. It wears the frequently misread shape of stillness.
Softness here holds a particular strength. To stay soft amid brutality is no capitulation. It is a deliberate refusal to let the world’s hardness become your own.
To choose fluidity where others stiffen—this, too, belongs to endurance.
I once hunted for resilience among fixed qualities like optimism, grit, or some other inner steel one could own outright.
But what if it is never a possession? What if it arises only in relation, in the space between one person and another? A living process. A shared rhythm. An ongoing improvisation.
It shifts with each day. One morning it is the courage to dial a number you’ve avoided for weeks. Another, it is clearing the calendar to lie beside a hospital bed and listen to the monitors. On the hardest days, it is simply placing one dish in the sink instead of surrendering the whole pile. The tiniest motion that nudges the thread onward.
Endurance is never a static identity. It is a repeated stubborn act in the teeth of whatever seeks to unravel you. It is the choreography of a solitary need answered by a communal offering. What endures, in the end, is not the armored strength we are taught to admire. What endures is the fragile, persistent choice to keep extending oneself. Extending toward the child, toward this exact bruised moment, toward any small mercy that arrives as a steadying hand, a lingering gaze, a single shared breath.
.
Some days I want to be strong the old way. The clean way. To be the unshakeable parent, the stable center of the wheel. But then the wheel turns. And turns again. And I remember no single one of us is the center. What holds us isn’t one thing. It’s a network of a hundred small hands, holding one another in the dark. It holds because we do.
I do not know what tomorrow brings. But I have learned not to brace against it. The future arrives like unbidden weather. We are not strong enough to make the sun rise. Still we live through the night.
This life demands a willingness to be remade by what we cannot control. Maybe that is all resilience ever was:
a slow unfolding web that we keep rebuilding for each other.
Until next time, stay safe, stay kind, and know that you are appreciated.
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.
We wouldn’t be here without you. Every bit of support helps and we appreciate it more than words can say!
Thank you for coming back, or for finding your way here for the first time. However you arrived—I’m so glad you’re here.
For the uninitiated the last day of February is set aside to honor people living with and alongside rare diseases. There are hashtags, purple ribbons, awareness campaigns, carefully chosen stock photos of smiling children in wheelchairs, copy text about resilience. The grammar of awareness is familiar by now. It asks us to notice, to learn, to care.
But as I sat down to write about just how rare she is, something else came to mind.
She isn’t rare at all; she is the opposite. She is ubiquitous. She is the single most present thing in my life. We are two folds in the same tablecloth at the banquet of life, tugging and smoothing the same fabric, spilling on the same places, living inside the same stains.
Rarity is a statistical category. It lives in spreadsheets, in prevalence rates, in the language of funding cycles and research pipelines. It belongs to the way medicine sorts and prioritizes bodies, the way institutions decide which lives get legible, which conditions get named, which suffering gets indexed. All of that matters. It shapes who gets help and when. It determines which clinics exist, which specialists you can see without driving three hours and taking a day off work, which questions can be asked because there’s a billing code to hold them.
But none of that is how she exists to me.
To me she is the sound of her breath at 2:13 a.m., the way the house goes still when a machine alarm cuts through a dream. She is the weight on my chest when her body is cold and needs to borrow my warmth for a while. She is the particular way her laugh breaks open a room that is otherwise heavy with unspoken fear. She is the choreography of tubes and medications and the small, fierce rituals of care that bracket our mornings and nights.
This isn’t to say there aren’t rare aspects of her. There are several: a certain genetic mutation; her wondrous talent for making conversation without making it entirely about her trauma; her complete inability to live de mauvaise foi; her penchant for bringing people together; her friends and family who have been willing to grow with us and learn how her life rigidly demands flexibility.
Her rarity shows up in exam rooms when clinicians lean in a little closer to the chart, when we become case studies by accident, when we are thanked for our “patience” because there is no protocol for this constellation of needs. It shows up in the way things like insurance systems, school districts, transportation requirements all assume a default body and then quietly fail anyone who doesn’t fit inside that template. Her rarity shows up in the assessment forms with boxes too small to hold the truth, in the phone trees that loop endlessly when you try to explain that your child’s needs don’t align with the options on offer.
It has been tempting these past six years to view her rare diagnosis as an obstacle. As an intrusive “something over there,” while who she really is lives “over here.” To tell ourselves that if we could just cure it, get around it, un-dam the damn thing, then maybe the rivers of our life would finally flow. As if there is a normal life stalled somewhere upstream, waiting for us to clear the blockage so it can arrive on time and according to plan.
Meanwhile many of the things we hoped for have not come to be, and many of the things we dread are now here.
This is the futility of a hope that is only oriented toward the life we were promised rather than the life we are living. This kind of hope can become a way of postponing presence. A way of loving some imagined future version of your child more than the child who is breathing in front of you right now. It can turn care into a holding pattern with mantras such as we’ll really begin once this diagnosis loosens its grip; we’ll really live once the system stops being so disorienting; we’ll really rest once the crisis phase is over.
But the crisis phase is no longer just a phase.
Her diagnosis isn’t something that happens to her. It’s just one way of trying to understand one facet of her existence. It is the language that medicine uses to speak about her body. It is not the language she uses to speak about herself. And when I confuse those two, I start relating to an abstraction instead of a person.
Parsing out her biological rarity, then, is a comparison game; and I have no great interest in doing that. Rare, compared to what? Compared to whose body, whose baseline, whose imagined normal? Comparison is the thief of connection. It tempts me to measure her life against a statistical average and call the difference a catastrophe, rather than to meet the singularity of her being and call it a relationship.
Letting her diagnosis be just one part inside the imponderable bloom that is the Kartoffel allows for all that splendid ambivalence around holidays, milestones, and awareness days. It lets me hold gratitude and grief in the same hand without asking either of them to justify being here. It lets me show up to Rare Disease Day without needing to perform inspiration or despair, without seeking absolution for experiencing conflicting (or unpopular) thoughts and emotions.
There are days when awareness campaigns feel like a thin layer of paint over a cracked wall. On those days I want to ask what awareness does when it doesn’t come with structural change such as respite care, or accessible housing, or reliable home nursing, or schools that don’t require parents to become full-time case managers just to secure basic accommodations. There are days when “honoring” feels like a euphemism for noticing without altering the conditions that make life so hard.
And there are days when I’m grateful for the simple fact of being seen, however imperfectly. For the provider who says, “I don’t know, but I’m willing to learn.” For the stranger who doesn’t look away when my daughter’s body draws attention in public. For the small mercies of community that appear in waiting rooms and online forums, in late-night messages between parents who recognize each other’s exhaustion.
Her diagnosis is rare, and yet her Being-in-the-world has become the absolute foundation of my facticity. This is the ground of my life now. The systems I move through, the language I use, and the questions I ask – about what counts as care, about whose bodies are considered costly, about how grief and wonder can coexist in the same afternoon – have all been rewritten by the daily labor of loving her.
As we honor Rare Disease Day, I hope a growing community takes time to reflect on the ways our culture struggles to make room for bodies that don’t conform to its narrow expectations of productivity, independence, and ease. My deepest hope is that we change the way we treat care as a private burden rather than a shared practice; because the truth is, people living with medical complexity are not edge cases. Rare diseases exist amongst our neighbors, our classmates, our colleagues, our family, and our friends.
She is rare, precisely because she isn’t.
She is everywhere in my life: in the way I think about time now as something elastic, punctuated by alarms and appointments and the long, slow work of waiting; in the way I understand dignity as something that has nothing to do with efficiency or self-sufficiency and everything to do with being met where you are; in the way I imagine a good society as one that is built for the most vulnerable first, becoming gentler for everyone else.
On Rare Disease Day, I can hold the colored ribbons and the spreadsheet in one hand, and her warm, inconvenient, luminous presence in the other. I can honor the language of rarity without mistaking it for the truth of who she is. And I can say, with as much steadiness as I can manage: she belongs without qualifiers. Rarity is a framework for medicine and advocacy, not a measure of worth.
She is life, up close.
Until next time, stay safe, stay kind, and know that you are appreciated.
Cheers, [kartoffelvater]
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I hope you enjoyed this post. Don’t forget to check out The Courageous Parents Network, a fantastic resource for exploring the world of raising children with disabilities and rare genetic disorders. Be sure to visit their site for more insights!
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]
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.
Every bit of support helps and we appreciate it more than words can say!
Just Wednesday of last week.1 I spent three hours on the phone, mostly on hold, listening to the same tinny muzak interrupted periodically by a robotic voice assuring me that my call was important. All while my daughter’s pulse ox alarmed in the background.
The shrill beeping was like a smoke detector with a vendetta. I paced between her room and the kitchen, the call sent to my headphones so I could still use my hands, toggling between menus on my phone screen. When I finally reached a human voice, they asked me for my daughter’s birth date three times and then transferred me. Again.
I was trying to resolve a denied claim for a medication my child needs daily. Denied because someone somewhere typed a wrong digit into a system. As I waited, I scrolled through emails, found two new forms to complete for durable medical equipment and a notice that our previous authorization for therapy was expiring. All this before I had even properly caffeinated myself for the day ahead.
Does anyone else feel like they’re living in some parallel dimension2 when dealing with these systems? A dimension where time stretches and contracts unpredictably, where logic operates by different rules, and where the most fundamental human concerns like a child’s health or a family’s stability seem bizarrely abstract to the gatekeepers of resources?
The Theater of Bureaucracy
There’s something almost theatrical about these calls. They ask for a case number you were never given, or send an approval letter for a medication your doctor never requested but a denial for the one they did. It’s logistical whiplash. You know something about your child—deeply, bodily—and the system acts as if that knowledge is either irrelevant or incorrect.
The experience reminds me of those philosophical terms I used to read3 and now live: epistemic isolation—a form of estrangement rooted not in how far apart we are, but in how and what we know.
At some point, we became accidental experts. I can now differentiate between CPT and ICD-10 codes. I know the hold music of three major pharmacies by heart. These are not the kinds of facts I wanted to carry but I do, folded in with the weight of feeding schedules and seizure logs.
The true irony is that this hard-won knowledge separates me further from those who should theoretically help us navigate these systems.
I’ve had the surreal experience of explaining coverage policies to insurance representatives, citing specific provisions they seemed unaware existed. In gaining this expertise, I’ve become something of an alien, speaking a dialect that even the native bureaucrats find unfamiliar. The more we know, the harder it becomes to explain to others who don’t4 live this way.
It’s like becoming bilingual in a language no one else speaks back.
The Untranslatable Reality
What’s harder to convey, what seems genuinely untranslatable, is the lived reality beneath these administrative struggles. There’s no box on the form for “I haven’t slept through the night in years.” No checkmark for “My daughter is nonverbal but lights up when she hears the sound of mama’s voice.”
How do I explain to the clerk processing our application that I completed her forms while sitting on the bedroom floor monitoring her temperature? How do I convey to the insurance reviewer that the treatment they’ve deemed “not medically necessary” is the only thing that allowed my kid to laugh again after months of pain? What does “necessity” even mean to someone who’s never suctioned their child’s airway in the dead of the night? Who’s never watched the life drain slowly from their spouse’s eyes as they read another denial letter?
Sometimes I imagine what our life looks like from the outside. A stack of labeled folders, a wall calendar peppered with acronyms. A father on speakerphone waiting for someone to believe him.
What’s invisible is the tiny, precise tenderness required to keep our daughter safe: warming her formula to the exact degree, timing meds down to the minute, understanding the shift in her breath before a seizure.
These are things you can’t write on a form. They are lived knowledge. A real, aching, daily dose of quiddity. But to the system, they’re noise. Background.
Between Planets
There’s a moment—maybe familiar—when you’re trying to explain, again, to a new person why your child needs something, and you realize: they’re not even on the same planet. Not metaphorically. Not emotionally. Epistemically.
They don’t share your frame of reference. What feels urgent to you is procedural to them. What is survival to you is a policy to be followed. You’re not just misunderstood. You’re unknowable.
I’ve watched friends’ eyes glaze over when I start explaining our latest administrative nightmare. I’ve endured well-meaning suggestions that betray a fundamental misunderstanding:
“Have you contacted your case manager?” (Only weekly for the past three years)
“There must be a program for that!” (There is; we don’t qualify for reasons that defy logic)
“Oh [so-and-so] had that happen to them, they just called and fix it right away!”
“Have you tried [insert some medication they heard about on a podcast]?”
“Remember to take care of yourself, you can’t pour from an empty cup!”
Yeah, but you can’t fill a broken one, either.
This kind of isolation is exhausting. It’s one thing to be unseen. It’s another to be seen inaccurately, again and again, by the very people you turn to for support. To have your reality mistranslated into metrics and platitudes.
The Loneliness of Insight
You start to notice things that at first blush seem like they should be wild conspiracies.
Those of us parenting medically complex children see shadows on the wall5 that others don’t, or can’t, or won’t. Patterns in these sanguinary systems that become glaringly obvious once you’ve spent years entangled in them. We understand that policies labeled as “patient-centered” were clearly written without a single actual patient in the room. Procedures allegedly designed for efficiency primarily serve to ration resources through attrition and exhaustion. Paperwork is designed to stall. Denials come faster than approvals.
At one point after our nth hospitalization for a particular illness, the Kartoffel finally qualified for a particular medical device. Exasperated, we asked a healthcare professional, “Surely it would be cheaper for insurance to provide the device preventatively, especially for a case like hers where the likelihood that she would need the device was just shy of definitively, instead of having to pay for multiple long hospital stays and the device anyway?” “No,” she responded, and explained to us that as counterintuitive as it seems insurance isn’t in the business of saving money, it is in the business of making money. And those are very different things. If they give you the device preventatively sure it saves them a little in the short run, but if they have to pay out for multiple hospitals stays and the device and most likely more hospital stays because they made you wait years and now your daughter is permanently compromised, then they get to raise premium for every single one of their members. Our stays and device costs them tens of thousands of dollars, but then they get to charge tens of millions more from everybody else.5
Compliance over Care
We see all this plainly, while others—even well-meaning professionals within these systems—seem to perceive only the official narratives about how things should work rather than how they actually do. Seeing these patterns doesn’t bring comfort. It makes the gap wider.
There’s a specific hue of loneliness in this insight. It’s like being the only person who can see a color that lacks a name, trying desperately to describe it to a room full of people who insist it doesn’t exist.
We are trying to navigate a system that was not made for us. Or maybe it was—and that’s the terrifyingpart.
Finding Our Language Again
There is a new grammar I’ve gathered from my years in this parallel dimension:
Document everything: conversations, who you spoke to, denials, approvals, hell even what hold music was playing.
Find allies within the system; there are compassionate individuals embedded in even the most heartless bureaucracies.
Develop a philosophical perspective that allows you to see these struggles as separate from your worth as a parent or your child’s value as a human being.
And when possible, step away from the paperwork long enough to remember why you’re fighting so hard in the first place—to see your child as more than a collection of diagnoses and needs.
To this end I try to carve out moments to connect with the world beyond medical forms and insurance appeals. I read novels that have nothing to do with healthcare. I get outside as often as I can, finding in growing things a reminder that nature operates by different rules than human bureaucracies. I try, however imperfectly, to maintain friendships with people who know me as more than “parent of patient #487-29B.”
Perhaps one day these systems will evolve to better reflect the realities of those they serve. Or perhaps one day these systems will be completely obliterated, and we will have to throw our baby out with the proverbial bathwater.6 Until then, we persist and become reluctant experts, finding community where we can. Other parents are out here—on hold, in waiting rooms, fighting the same fight. When I share these stories, they nod before I finish the sentence. There’s a brief exhale, a knowing look.
And that’s the strange hope: our isolation isn’t unique. Which means it isn’t total.
Sometimes connection begins not in acicular nature of answers, but in shared bewilderment. In hearing someone else say, “Yeah, it feels like a different planet to me, too.”
And from a place within the mess we begin to find our language again. Language that doesn’t flatten our lives but stretches to hold their weight.
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.
We wouldn’t be here without you. Every bit of support helps and we appreciate it more than words can say!
Honestly you could cover your eyes, throw a dart at a calendar, and you’d land on a day similar to this one. ↩︎
Or in a dystopian novel, if you’ve spent any amount of time watching the news or reading the comments section. ↩︎
This is going to happen a lot, but I understand that approximately zero of you signed up for a philosophy newsletter and rightfully so, those are awfully dull (; ). I’ll do my best to put the concepts into narratives, but every now and then a term or two is going to slip out. ↩︎
And shouldn’t have to. No one should live this way; this isn’t a way of living it’s a simulation of simulated lives wrapped up in red tape. ↩︎
I’m being cagey with some of the details on purpose (like the device, the illness, and the position of the healthcare professional) because I have a healthy distrust of people who are in the business of making money off of the suffering of children and don’t want the device taken away or the professional to be fired. Another family got this same device before a single hospitalization for (not) said illness, because again, it’s not about making sense, it’s about making money. ↩︎
This post was not written in regard to a certain piece of recent legislature that has been much talked about in disability, and many other, communities (and anyone reading it as such is doing so of their own volition) but it easily could have been. One theory says all anxiety comes down to two base fears: separation and annihilation. This post deals with the former whereas to fully unwrap the reactions I see and feel about the bill I would need to explore the latter. Maybe next time. ↩︎
Our Little Kartoffel 