Moonlight spills like milk across her bed, a thin stream catching coils of line and lead. The monitor hums its spectral tune— a lullaby wrought of wires and wound. Each beep, a knell. Each blink, a vow. The hour is glass. The time is now.
A shadow pools beneath the crib, as if the dark itself could give. Her chest heaves slow beneath the thread of formula spilled and stories said. My hands, half-ghost, perform the rite— the midnight meds, the mask held tight.
And still, I keep the watch.
The rasp of breath. A stuttered sigh. The sterile tang of passing night. She stirs—her fingers brush my arm, small, sun-warm stars against alarm. And still I wait. And still I count. The dips and rises. Every ounce.
I chase the tremor down her spine, where silence blooms like bitter wine. Each tremble taught me how to move— no hero’s grace, no dance, no groove, just habit honed by sleepless grace, a practiced prayer I dare not face.
And still, I keep the watch.
And when she laughs—half dream, half moan— it splits the hush, and I am shown a world beyond the vinyl blinds, where sorrow’s weight and joy entwine. The moon, the girl, the ticking air— a room suspended in despair.
The blanket slides; I fix it twice. The oxygen reads ninety-five. My fingers skim the plastic tube, the cold that binds and might unglue. I whisper names, both hers and mine, as if words stitch the fraying line.
Each night, a sea that pulls me in— the tides of breath, the pulse within. The needle floats, the liquid stings, the timer calls with metal wings. But still I wait. But still I stay, and trade my sleep to keep her day.
The hallway hums. The house is still. Outside, the dark resumes its fill. And I, unbodied, sit and lean between the world of loss and dream. One hand on hers. One on the chart. One tethered bone. One breaking heart.
The moon withdraws behind the shade. I wipe her lips. I bow. I wait. And think, perhaps, if light returns, I’ll name it thanks, though nothing’s earned. This night, like all, is not the first— the same pale bloom. The same dark thirst.
And still, I keep the watch.
And yet, it’s new. And yet, it’s ours. A vigil strung through ghostly hours. No end in sight. No rest to lend. Just breath. And touch. And then—again.
On Resilience, Reliance, and the Promise of the Net
I’m sending out an article I originally contributed to The Courageous Parent’s Network. You can find the original here: Yielding
We have been told that to be resilient is to stand apart. To weather the storm unmoved, to endure without breaking, to carry the weight without complaint. Fathers especially are given this story. The good father is the oak: tall, steady, admired precisely because he does not need to lean. He shelters others but never asks to be sheltered. His strength is measured by how little he requires.
This myth has a certain beauty to it. We do not carve statues in the shape of vines; we carve them to look like pillars. All that is soft is gone, what remains is that which is hard or has been hardened. And yet, when you live long enough inside the weight of grief and care, the myth begins to feel brittle. A father who cannot bend, who cannot admit need, eventually snaps. The oak rots from the inside. The story I inherited about resilience has left me lonelier than I know how to name.
I did not really begin to question this until I found myself sitting at my daughter’s bedside, watching her chest falter in the dark. One breath would come, ragged and shallow, then a pause too long. Then another gasp, as if her small body was unsure whether to continue. In those moments, she did not fight. She yielded. She let the air and the mask, and our trembling hands do the work. She trusted that she could rely on what held her.
Her resilience was not in resistance but in reliance. And it startled me. Because if resilience for her is reliance, if her survival is the sum of many hands, many ties, many threads, why have we been taught to imagine resilience as the opposite? Why have we been told that to lean is failure, that to rely is weakness?
Endure in silence, carry your grief like a private stone, prove yourself by not needing anyone. This script makes us solitary. It distorts fatherhood into isolation, as though to love well is to disappear into a fuzzy invisibility. But a single knot, no matter how tight, cannot hold anything on its own. Only when the knots are tied together do they form a net. A father’s resilience, I am beginning to believe, is not found in how firmly he can stand alone but in how deeply he can rely and be relied upon. Resilience is reliance. Strength is not in separation but in connection.
There have been other moments, lower ones. Sitting on the floor holding my daughter when she is too weak to play, to sit, to do much but be held. I trace her small fingers as she drifts in and out of awareness. I often cry then, not from crisis but from the sheer fact that I cannot change her body, cannot take away the fragility she carries every day. Her eyes sometimes meet mine here for a moment before they close. She does not flinch from my weakness. She doesn’t need me to be unshakable; she needs me to be here. A father willing to remain, even if that means relying on her gaze to steady him.
This is the reversal our culture resists: fragility is not the opposite of resilience, but its ground. My daughter’s life has taught me that. The ventilator, the feeding tube, the medications, the meal trains, the help around the house, the thoughts and prayers and good vibes whispered over her—all of it is reliance. And yet it is precisely in this web of dependence that her life continues. Resilience emerges not in being untouched by need but in being held within it.
A spider’s web offers a better image of resilience to me now than an oak. The web trembles. It breaks. But it is also repaired, rethreaded, renewed. Its strength lies not in rigidity but in flexibility, not in singular hardness but in the pattern of connection. Each thread relies on the others; each knot tied to something beyond itself. Fragility is not erased; it becomes part of what holds it all together.
Fathers are rarely given permission to see themselves this way. We have inherited a silence, a script that says we must carry the weight without asking to be carried. And so, we rarely speak to each other about care, about grief, about the unbearable tenderness of watching a child suffer. We retreat into the myth of the oak and call it love. But what if fatherhood were something else entirely? What if resilience has always been reliance, and our silence has only deepened the fracture? I imagine naming aloud the weight of nights spent pacing hospital corridors, the helplessness of waiting rooms, the fear of not being enough. Not to prove endurance, but to weave ties. To hold each other as surely as we hold our children. What if fatherhood was not a fortress but a net?
Reliance does not mean passivity. It means fidelity. To keep showing up even when you cannot fix, to remain present when nothing changes, to lean and be leaned upon. This too is strength. When I sit beside my daughter during a seizure, I cannot stop it. All I can do is hold her hand, call her name, wait for her to return. My resilience in that moment is my reliance, on her will to come back on my wife’s presence, on the small circle of love that refuses to let go.
This is why yielding has become, for me, another name for love. To yield is not to surrender the bond but to trust it more deeply. To stay when you cannot control. To let others carry you when you cannot carry yourself. Yielding is not weakness. It is reliance. It is what nets are made of.
And in the end, this is what remains: not solitary strength, not the illusion of the oak standing alone, but the quiet fidelity of ties that hold. My wife’s hand in mine. Friends who ask the second question. Machines that breathe for my daughter until she can breathe again. My daughter herself, teaching me without words that life is carried by yielding. When I get to thinking like this, she looks at me as if to say, “Of course it takes more than one person. You’d last what, maybe 2 minutes on your own? 3 tops if someone left you snacks.” Alas, she is non-verbal, and I don’t read minds.
The myth told me that to be a resilient father was to stand apart. My daughter has shown me that resilience is the opposite, it is to stand together. To be one knot in a net strong enough to hold the weight of the nothingness of grief. To yield to reliance, and to find in that yielding not failure but promise.
Resilience as reliance, not resistance.
These ordinary instants are the ones that change your life.
Until next time, stay safe, stay kind, and know that you are appreciated.
Cheers,
[kartoffelvater]
I hope you enjoyed this post. Don’t forget to check out the original article over at CPN, 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 Inadequacy of Language and the Uniqueness of Grief
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.
The moon peers down, indifferent to the tree’s lonely silhouette
Hallo Kartoffelkumpel,
I have spent the past several posts and several thousand words trying to communicate what it was like to step into that particular grief of getting a life altering diagnosis for your child. I am about to give you a couple thousand more on how none of those other words will ever accomplish that task. This is a little longer post than usual so feel free to break it up if you’d like as I’ve tried to write each section to be (mostly) self-contained. I believe in you.
We reach for language like reaching for handholds on a cliffside, only to find that some crumble in our grip. Still we reach, because reaching is part of being human.
The Skin of Language
We live inside words.
They shape how we think, how we share ourselves, even how we imagine what is possible. From the first sounds we mimic as children, language wraps around us like a second skin. It orders the chaos, gives names to things, lets us believe the world can be held in syllables.1
And yet there are moments when words abandon us. They shrink when we need them most. In the presence of love so fierce it hurts, or suffering so sharp it takes the breath from your chest, language begins to stumble. It gestures, it repeats itself, it circles like a plane above an airstrip waiting for clearance to land but it never quite arrives.
Grief makes this failure unavoidable. It is not a tidy emotion, if it even is one at all. It’s not something that fits neatly inside the words sadness or loss. Grief is a kind of terrain.2 For some it feels like erosion, a slow dissolving of the self; for others it is sudden storm, or a silence that fills the room like heavy air. No two landscapes are the same, no two losses identical.
When a doctor pronounces a diagnosis for your child, perhaps a rare one and life-altering one, grief rushes in differently. It is not a single event, but an unmooring. Words arrive—strung together from syllables of medicinal Latin, percentages, prognoses—but they do not match the feeling in your chest. You hear the phrases, you even repeat them back, but they do not touch the living, wordless rupture opening inside you. The vocabulary of nosology and the vocabulary of emotion pass each other like strangers in the night down a hospital hallway.
This is the puzzle I keep rearranging the pieces for. The very tool we depend on to make meaning cannot hold the weight of one of the most meaning-making things we experience: grief. Words are too orderly, too bound by grammar and sense-making, while grief is stubbornly irrational. It doesn’t follow a sequence. It doesn’t stay inside lines. It lives in pauses, stray memories that ambushes you in a grocery store aisle, in the particular way you inhale after a doctor says, “I’m sorry…”
To grieve is to find yourself beyond the sound and sight of sentences or signposts. You reach out hoping for anything to catch you, grasping for branches but finding only breath.
Language depends on shortcuts. Each word gathers a history of shared usage, worn smooth by repetition. To say I am sad is to gesture toward a vast common experience, but it never touches the particular texture of embodied3 sadness, let alone something as complex as grief. The sadness of a rainy day is not the sadness of losing a child’s future you once imagined and yet language hands us the same small syllable, flattening both into a single shade.
Metaphors try to rescue us. We say, it feels like a hole in the heart, a wave crashing over me, a dark cloud overhead. They help for a moment. But each metaphor strains under the weight. A hole implies emptiness, when often what you feel is not vacancy but a relentless, heavy presence. Waves suggest rhythm, but grief rarely has a rhythm, often breaking without warning. Images help us reach toward each other, but they fail to reach the center.
Sometimes silence does more. The unspoken pause after someone asks how you’re doing. The stillness of a hospital hallway when no one knows what to say. The absence of language can mirror grief more faithfully than any phrase. Words, in their neat pursuit of definition, can become a distraction, a false map. Silence, on the other hand, can be truer: a shared acknowledgment that what is happening has slipped beyond speech.
Grief is a language we are born into but can only learn to forget, and writing is the clumsy dictionary of its echoes. It exposes language for what it is: necessary but not sufficient, and always partial. A scaffold built too small for the weight it’s asked to hold.
Culture tries to give us language for this singularity. In Portuguese, there is saudade—a word for longing that is not just nostalgia but an ache for something gone, something perhaps never fully possessed. It lingers like scent in an empty room, a shadow of what once was. Beautiful, yes, but still only a gesture.
In Japanese, mono no aware4 points us toward the fleetingness of all things like the blossoms that scatter too soon, the light that changes as afternoon slips into evening. Grief, here, is not an interruption but part of the fabric of life, inseparable from joy. The word teaches acceptance, but even so, it cannot quiet the raw cry for what has been lost. Where saudade leans backward toward what has slipped away, mono no aware opens our hands, reminding us how little we can keep.
In Czech, lítost names the sharp torment of being laid bare by sorrow, of seeing one’s own misery reflected back, unhidden, unendurable. It is the humiliation of being unraveled, the sense of standing exposed in a grief so consuming it strips away any pretense of composure. Where mono no aware offers a tender resignation, lítost recoils, refusing grace, showing us instead the raw nerve of being broken while the world carries on as though untouched.
In many African traditions, ubuntu offers another vision: “I am because we are.” In grief, ubuntu names the rupture that is never private, the tear in the communal fabric when one thread is pulled away. It reminds us that mourning is not carried by a single body but shared among many, that even when loss isolates, the work of grief is also to draw us back into relation. Where lítost exposes the unbearable solitude of loss, ubuntu insists that no sorrow is borne alone.5
These words are gifts, little lamps lit against the vastness of loss. But they remain fragments. Grief will not sit still long enough to be captured by any one of them. It shifts, transforms, unsettles. What feels unbearable one season may soften into memory the next. Anguish can turn into tenderness, and then back again. Grief is not a state but a space that is labyrinthine, unpredictable, never identical twice.
Grief does not repeat itself.
Each grief is singular because each love is singular. To speak of grief as though it were one thing is to miss its essential fact: it is always bound to the someone experiencing it. It is a clearing always found within the intricate forest that is Life. Though it touches us all it refuses to be universal.
Grief insists on being lived, one body at a time, one love at a time, one loss at a time.
When words collapse under the weight of grief, we reach for other forms. Art, ritual, sometimes the body itself. These become languages that do not rely on sentences and yet still speak.
A poem6 can sometimes hold what prose cannot. A single image, distilled to its sharpest edges, can carry more truth than paragraphs of explanation. A line of verse does not need to define grief; it only needs to open the door and let us recognize ourselves inside it. Music7 does this too. A melody, without a single word, can slip past the mind and lodge itself directly in the chest. I think of the hush that falls in a room when a slow piece is played, the way people instinctively bow their heads, as if grief itself had entered and everyone feels it together.
Ritual offers another way. In some traditions, grief is guided by prayers, chants, days marked off with candles and incense. In others, it is met with color and feasting, the telling of stories, the building of small altars that make the absent present again. Whether solemn or celebratory, rituals create a frame strong enough to hold what feels uncontainable. They tell us: you do not have to carry this alone.
And then there is the body, which often speaks before we do. Shoulders slumped, hands trembling, the uncontrollable rush of tears. These are not accidents or symptoms; they are grief itself made visible. A body bowed in sorrow is already telling the truth words cannot manage.
None of these are complete. Not poetry, not music, not ritual, not even the body’s raw cry. The silence of grief is a vast, echoing chamber, but writing opens a window, admitting light and shadow in equal measure.
And Now For Some Living
When I think back to the day of my daughter’s diagnosis, I remember the words of the specialist but more so the quiet in the days after. The long hours sitting in the hospital room between rounds. The eventual drive home. The way the world outside the windows seemed both unbearably sharp and strangely muffled. It was grief announcing itself. It was not the grief of death, but of thresholds, of futures foreclosed and futures unknown. Just this past week we stepped through another door into a new clearing of grief, full of its own wilderness we know nothing about.
This kind of grief does not resolve. It does not move neatly through stages.8 It lingers like fog, receding, then thickening again, a weather of the soul. And yet, in its persistence, it teaches that grief is not only about endings but about the weight of love pressed against finitude. We learn that here loss isn’t the source of all grief but rather grief is the source of seeing loss in all things. To grieve is to feel the depth of our attachment in a world where nothing is guaranteed.
We search for words because ordinary language falters. But even the richest words and rituals are but charcoal sketches of the outline. The rest must be lived. It is in the feeding tube, the hospital corridors, the held breath before a monitor alarm. It is in the laughter that arrives anyway, sudden and undeserved.
So when we speak of grief, whether in poetry or diagnosis or silence, what are we really doing? Everything spoken about grief is a compromise with what cannot be spoken about. A necessary defeat. Perhaps then it is not a thing for words. Perhaps it is not a thing for us to solve or explain but something more like a clearing in the forest of our lives allowing us to hold space for what exceeds us. A space to honor the fragile, relentless truth that love and loss are never separate things.
In this way, my daughter’s diagnosis was not only a moment of grief, but a opening up of a new way to see, a call into a life where joy and sorrow are braided so tightly they cannot be unknotted.
And maybe that is what grief offers in the end: not resolution, but a
…
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!
Language is the house of Being, as has been said. Some would even say time itself is nothing more than a series of syllables. Still others believe that the limits of language actually mark the limit of your world. ‘Words matter!’ is an often used slogan, especially in the disability community. You would be hard pressed to find anyone using words who don’t think words are important. And yet…
This is actually the crux of my theory on grief, but this is a newsletter not a book (for now) so it’ll have suffice for now to see glimpses of it in posts until the full idea is fleshed out. What a lovely grotesque phrase, ‘fleshed out’.
One of the greatest challenges in language lies in the chasm between naming a thing and being that thing. The word labels a general emotion, an abstract concept but it cannot fully capture the singular, visceral reality of an individual’s experience of it—say, the heavy ache in one’s chest or the quiet sting of a specific memory. It’s why so many people are surprised when they take time to actually sit with what they are feeling. They look inside and find fear, anger, relief, even some version of peace when they expected to find only sad, which is then suddenly flooded by confusion, pain, and maybe even humor.
Another concept that resonates from Japanese culture is yūgen. It gestures toward the depth beneath the surface, a beauty veiled in mystery, tinged always with sorrow. It is the moon half-hidden by drifting clouds, the hush that falls when distant bells fade into silence. I hear grief speaking through yūgen when the world itself feels thickened, but the dark brightness it evokes will have to be saved for a future post.
These examples are not exhaustive of cultural expressions of grief and longing, nor do they fully encapsulate the complexities of Portuguese, Japanese, Czech or African cultures. They are selected to illustrate specific linguistic and emotional nuances, but many other cultures and languages offer their own unique terms and perspectives that equally reflect the universal yet varied experience of loss. Every culture has or had a unique grieving expression with countless variations within themselves. It is the precise nature of this universality of grief that makes it so ineffable.
I will have to write more about poetry, maybe even write more poetry itself. Currently, sections of Rilke’s Duino Elegies and Ovid’s Heroides are leaving my soul in ruins. If you have some poems you enjoy please send them my way.
This is not a discarding of Elisabeth Kübler-Ross’ much maligned model of the five stages of grief. It was originally developed to describe the emotional experiences of terminally ill patients facing their own mortality. Its application has often been extended to other forms of grief but this broader use can sometimes lead to misunderstanding. Often when individuals find the stages do not align with their unique grieving process, they feel the model is altogether invalid. In truth, Kübler-Ross intended the stages as a flexible framework, not a universal or linear path, and its misapplication can overshadow its value as a compassionate lens for understanding certain experiences of loss. I’m merely stating that the kind of grief I experience in the wake of the Kartoffel’s diagnosis doesn’t fit.
Why cry over parts of life when all of it calls for tears?
Part IV: Creation
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.
Hallo Kartoffelkumpel,
Last time, I told the story of the diagnosis as it first arrived: the room, the ritual, the collapse of assumed futures. But that collapse wasn’t the end. It was the beginning of a different way of seeing, one that unfolded slowly, not in a single revelation but in a repeated clearing. This fourth part turns toward that reframing: the shift from categories to presence, from interpretation to attention, from projection to companionship.1
The Reframe
She already knew this part of her story.
It had been written, long before they named it, in the spiral of her DNA, in the pulse of her seizures, in the particular way her eyes followed light and lingered in corners most people forget to look in.2 Her body was not waiting for a diagnosis to begin. She had been composing herself all along, in her own cells and reflexes, in her own mystery and music.
The diagnosis wasn’t the start of something going wrong. It was the moment I realized that I had been trying to read her in the wrong language. Not because their words were false, but because no single vocabulary could hold her. The medical terms carried information that is useful, even life-saving, but they were written in a dialect that flattened mystery into measurement.
She had been speaking all along, but not in speech or in symbols easily translatable. Her story was being told in her gaze,3 in the pause that came before her movements, in the way her breath caught slightly when something unfamiliar entered the room. I had to learn a new kind of reading. A reading that didn’t seek to decode but to dwell. A slower, less certain form of knowing. This wasn’t interpretation in the usual sense. It was presence. Attention. A kind of looking that lets meaning arrive down the river of life without damming everything up to get it to stop moving.
There’s a scent that still takes me there. Faint, sweet, the unmistakable blend of antiseptic wipes and liquid medications with names I had to learn how to pronounce. At first, I thought it smelled like illness. But that was just habit. It’s not the smell of pathology. It’s the signature of her body’s particular way of being in the world. The smell of her dwelling. Not a broken body. Just hers.
The more I stepped outside their categories, the more I could see her. Not a symptom cluster, not a case study, but a person with her own splash of watery logic. Her own tempo. Her own kind of sense-making. It’s not that I believe the medical team was wrong.4 Many were kind, most were precise. Their language can do important things like initiate care plans, organize teams, open doors to resources and communities. But correctness is only one face of that gem we call truth.
She is another face.
The diagnosis is a tool. And like all tools, it can build or destroy. It can cut a path or narrow a view. When it leads us away from her into prognosis charts and comparative graphs, into fear or exclusion it becomes a covering. A veil. But when it brings us closer, when it becomes a way of naming without reducing, of pointing toward without containing, it becomes a means of disclosure. A way into authentic encounter.
She does not move by the tyranny of developmental timelines. She moves according to her own rhythm that bends clocks, reorders days, unsettles categories. And if I let go of the need to measure I can learn to move with her.
This is what was really being revealed when we moved from assumptions to categories and now to an understanding that this was never about fixing her. It was about learning how to see her.
The Creation
They looked at us as if the ending had already been written, but her fierce eyes were writing a different myth.
Not tragic in the way they meant—some cautionary tale to be met with sorrow and sidelong glances—but tragic in the oldest sense: ontologically consequential.5 Her presence discloses a world while her being rearranges the space around her.
From the clearing left behind by discarded assumptions, new forms of life began to take root, new ways of being-with emerged. Not heroic or inspirational in the way people mean it in on social media. Just new. Attention became something else entirely. It was no longer the scanning kind that is always measuring, anticipating, comparing. It became a sort of habitat. Attention as tending to. Witnessing. An open stance for a gesture, a sound, a silence that might mean everything or nothing, and staying with it either way.
Care, too, changed shape. It stopped being about fixing, optimizing, progressing. It became more like attunement, like standing in a forest long enough for your eyes to adjust to the subtle movement of branches. We began building rituals, not to bring her up to our pace, but to meet her in hers. Therapies still happened. Medications still mattered. But they were no longer the horizon. The destination was no longer normalization or representation or acceptance.6
It was her. Us. Our lives together.
I didn’t plan then that stroller walks would become exercises in authentic temporality, moving according to her rather than imposed schedules, but that’s what they became. A way of inhabiting time that had less to do with clocks and more to do with companionship. With noticing. With letting the world arrive rather than always rushing toward it.
And here is where she began to challenge things I didn’t know I still believed. About autonomy. About progress. About worth. About what makes a life meaningful.
Her way of being insists on a deeper definition of life. One that doesn’t begin with independence or end with achievement. One that starts instead with connection, with the kind of knowing that doesn’t ask for proof. A relationship without expectation beyond evidence of my affection, and knowing even then that love without reward can have value and bring meaning.
This wasn’t the creation of a new normal. It was the beginning of something truer than normal ever was.
Living Inside Authentic Understanding
This is not an arrival.
Authentic understanding isn’t something you reach and hold. It’s something you return to again and again and again and twice more again as the layers of interpretation, fear, and projection slowly peel away, fold back onto you, and peel away again.
Every child arrives with their own mythology. A way of being that often contradicts the categories we’re handed. But some children make that contradiction more visible. They carry it in their eyes, in their bodies, in the ways they refuse the usual arc of progress.
She did not come to teach me a lesson. But living with her is not just parenting, it’s an ongoing education. I have learned to question what I thought I knew about time, about care, about value. She undoes those inherited logics not with argument, but with…something I’m still trying to figure out.
The diagnosis scene wasn’t an ending. It wasn’t even a rupture in the way I first imagined. It was a threshold. Not into despair, but into a deeper encounter with what is. A shift from reading the data of life to reading the her-ness of life. An opening to loving the whole of her life and not just the sweetness of it.
And each day, that work begins again as she reorients me away from metrics and toward herself. Away from the future tense and into now.
Because the categories accumulate quickly—well-meaning advice, comparisons, progress updates, the quiet internal voice that still asks, “Is she improving?”—each day, I have to clear space again. To set aside what I think I know. To resist the urge to measure, to explain, to translate, to look for her getting ‘better’.7
Instead, I try to be with her. To notice. To let meaning emerge without forcing it into form. She is not a puzzle to solve. She is a whole universe to experience. And when I look now at those dust motes in the sunlight, I see they haven’t changed.
The light is the same. But I can see it differently.
It doesn’t illuminate in the way I once thought by casting light onto things from the outside, explaining them.
It reveals.
And what it reveals was always already there. Waiting.
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!
The subtitle of this post is paraphrasing a quote from Seneca:
Why need we weep over parts of our life? the whole of it calls for tears: new miseries assail us before we have freed ourselves from the old ones.
I had it picked out before the events of this past week. Those who have chatted with me about my philosophical inclinations probably can guess how I interpret it and why I chose it. You are of course welcome to interpret it as you wish, and I would love to hear what you think.
And now, thanks to the incredible efforts of her therapist, her gaze is literally telling us her story. More on that later. Spoilers, she’s got a lot of sassitude.
Again, this is not a case of ‘how dare they put a limit on what my child can do!’ because, as you’ll remember, we asked for this information with far more enthusiasm than they gave it to us.
I really try to not use jargon, but ‘ontological’ is a word that just feels good to say for me. Basically what I’m saying here is that tragedy is an important concept for understanding who she is. See here and here (that second one was published but not emailed so it might be new for you!)and if you got the time for a deeper dive check this one out.
Acceptance is not, cannot be, the goal. It is not a skill you learn or practice. It’s not something on a checklist that you grow strong enough to check off. You don’t grow into acceptance, it grows out of you. It’s an orientation of your Being, a way of relating to the facts of your ‘here-ness’. Acceptance comes from engagement with, not detachment from, the hard bits of your life. It is the bloom that unfolds out of the richness of experience, not the limiting of it. Acceptance, like Hope, is found in the mud made from the tears of an intentional existence. It is the sweaty residue of authenticity that drips off of your soul.
Some parents have a broadening of their idea of ‘better’ aided by the progress of their child, regardless of how incremental that progress is. They learn that ‘better’ can mean many things across as many situations as their child’s progress exposes them to. Other parents have a deepening of their idea of ‘better’ aided by the persistent decline of their child. ‘Better’ doesn’t mean more things than before but rather becomes something nuanced and complex.
The real work begins when you examine your need for things to get better.
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.
Hallo Kartoffelkumpel,
There are moments when language enters a room and changes everything. Not because the child has changed, but because the words bring with them an entire set of assumptions about who she is, who we will become, and what futures are allowed. We are continuing our story in one such room, a retelling of how certainty arrived dressed as compassion, and how in its wake everything we thought we knew began to unravel.
Initially Lived
The room is blue.1 Not a rich, oceanic blue, but that institutional shade meant to calm the nerves and erase the edges. Under fluorescent light, everything flattens. Depth gives way to surface. The walls constantly hum from the ventilation system, its steady grind both comforting and vaguely oppressive like white noise on the verge of comprehension. Nothing echoes here. Not footsteps. Not voices. Not dreams. The drywall has learned how to absorb things. Laughter, sobs, even silence seemed silenced.
There is a choreography to how medical teams enter. The gathering outside. The furtive glances through the door window. The soft swift double knock. The stolid arrangement of bodies around the room. The small clipboard becoming a pulpit. Someone sits beside us with practiced intimacy; another stands near the sink, arms folded not in tension but in containment. They’ve done this before. The ritual of revelation. I really should have peed before they came in.2
Morning sunlight slants through the blinds at a sharp angle, catching dust in midair. Each mote suspended like a decision unmade. It’s all very Lucretian.3 The rest of the room pretends to be neutral, but here, with this beam of sun spilling over an impossibly small child and parents with impossibly big emotions, it feels like the world trying to remind us of itself. A different world. The one outside all of this categorical speech. And then, the words come. They do not arrive on their own but rather they bring interpretation already stitched into their seams. The name they offer comes with a forecast, a narrowing of horizons. It isn’t presented as possibility, but as path. I don’t mean ‘possibility’ as in we should get a second opinion, or as in ‘there is a possibility this isn’t her diagnosis’ but rather as a wiping out of possibility itself. There is an assumption braided into every syllable: This is what your child is. This is what your life will be.
A packet rustles. Something sterile is unwrapped, too loudly for such a quiet room. She has always hated the sound of the dry, high crackle of plastic peeled from plastic.4 It makes her flinch. It makes me flinch too, now.
Their voices brought me back from the crinkle and a sensation settled in my chest. Not a sharp pain or a flood of chill. You know that feeling you get when a yawn seems to take too long to get out? The endless stretching of your jaw, eyes watering, a pressing at the back of your throat, and the emotional feeling of ‘geez when is this ending’? It was that. My chest yawns open, hollow and wide, a strange stillness caked with unreality. They are so sure. Their voices are calm, even warm. And I am floating somewhere just above the chair, watching our heads nod.
It is a peculiar thing to watch someone interpret your child for you. To feel your own life narrated by people who met her an hour ago. Better yet to want them to interpret your child. Better still to go through hours and days and weeks of pleading with them to interpret your child. We asked for this, desperately, and now that they were here doing the thing everything in me wants them to forever stop telling this story. But they don’t, because we asked them to tell us more. There is politeness to their devastation, a decorum that sharpens the surrealness of it all.
She is quiet in the crib. She’s listening. Same weight, same breath. But everything they say wants to cast her differently, as if what I’ve known until now was just a prologue to this moment of definition.
And still the dust floats in the sunlight. Still the walls absorb the sound.
A Necessary Clearing
There’s a rhythm to our lives in what follows, but it isn’t musical. It’s the sequence of required gestures: the phone calls that must be made to those with their phones off silent, the hesitant relaying of words we’ve only just heard ourselves. I said them slow, like a foreign script. Malformation. Genetic. Developmentaldelay.
Pachygyria.
I say them slowly, so they don’t collapse in my mouth. The people on the other end seem to know what these words mean. Or at least, how to respond to them. There’s a new vocabulary forming between us, and I’m already behind. They offer condolences, or silence. A change in their breath. A pause long enough for the sound of my own confusion to echo.
Outside our room, the look appears. The one I didn’t yet know how to name. The half-turn of the head. The slacking of the mouth. The encouraging furrow and lipless smile that other parents give seeing your kid wrapped up in a tangle of wires and gauze. That slow blink providers give when they’ve read the chart before seeing the child. A look that positions them above us. A sorrow that looks like kindness but wells up quietly from relief: ‘Thank God it’s not us.’
I do this look now, too. I know which formation of doctors comes for the first destruction. I know the steady walk, the clipped voice, the way one of them always holds a hand against their ID badge. I recognize that tone. And I recognize the look in the parents’ eyes when they pass me in the hallway: uncertain, stunned, searching my face for a clue. Eyes looking at me looking at them with that look of being looked at. I am on this side of the door now, and yes, I am glad. But so much of this side still looks like that side. So much of the known tastes like the unknown when it streams from yours eyes down your cheeks. I want to tell them that. I want to tell them everything. But I haven’t yet found a way. So I furrow my brow, give a lipless smile, and nod.5
Later, I drink the coffee from the family lounge. Bitter. I think at first the taste is from the carafe but no. It lingers long after I’ve thrown out the cup. It settles at the back of my tongue, coats my teeth. It isn’t fear exactly. It’s the aftertaste of someone else’s certainty rubbing against my disintegration.
In the days that follow, I begin the mental inventory. I do not cry so much as list things out. All the futures I thought were waiting for her. For us. Language. Laughter. Independence. Dance class. Birthday parties with deliciously smashed cakes and spilled juice. A backpack chosen for kindergarten. A tiny violin. I mourn them all in sequence, as if they were events we had already lived and now must rewind. But beneath the grief is the recognition that these futures were always mere fancies of mine, not hers. They were projections, not promises.
And once you see that, once the scaffolding collapses, the whole idea of normalcy begins to shimmer. It no longer holds. What is development, anyway? What is parenting, stripped of progress charts and comparison?
The coolness of the hospital sheets startles me. I lie next to her with my hand resting lightly on her belly, rising and falling, and realize how much she already knows. Not about diagnoses or expectations. But about being. About presence. Our bodies breathe in rhythm, and something in me hushes.
She does not need categories to tell her how to exist. She does not need to be interpreted to be here. Her admission to this life of riddles is not contingent on her solving them.
This thing, this diagnosis, that felt so much like an ending, was in reality a dismantling of assumptions.
The Pause
The Notebook began here, in this moment between inherited interpretation and authentic encounter. In a room where words tried to reshape our world. Not with violence, but with certainty. The kind that arrives in printed discharge summaries and bullet points, with boxes checked and acronyms bolded. But what if the reshaping wasn’t destruction? What if it was something else? Not a fire, but a slow unveiling. A clearing, like you find in the woods.
There’s a breath. A pulling back. A moment, small and easy to miss, in which the rush of connate meanings pauses just long enough for something else to flicker in. The fluorescent lights still buzz. The coffee is still bitter. The chart still sits where they left it. But she is also still here.
Same eyes. Same curls hidden and hopefully not damp under the cap of gauze and wire. Same fluttering fingers. The same child I held an hour ago. Nothing essential has changed. Except now the air feels different. Not because she has changed, but because something false has been cleared.
What if we’ve been given the wrong framework entirely?
Not just the wrong name, or the wrong prediction. But the wrong lens. What if the problem isn’t her diagnosis, but the exegetic habits we carry into that moment? The assumptions we inherit, the narrow ways we’ve been taught to read a body, to measure a mind, to count time.
And maybe that shift that I almost missed, buried between chart notes and condolences, was the beginning of something more honest.
She hadn’t changed. The story had.
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!
The neuro floor of our hospital just recently moved and it’s all purple now. Which, if you know, is very fitting. Still not sure if it calms the nerves and erase the edges but I’ll let you know the next time we are inpatient.
Once upon a time I played music publicly. Quite frequently too, even recorded a few albums, ‘toured’ with a band, I was underage in this funky bar, as Paul says. Most of my band name suggestions were discarded but one I always wanted to have announced before we walked out on some smoky stage was ‘You Shoulda Peed First’. Just as a gentle nudge to all the people who would now be stuck listening to a mediocre punk band playing outlawed tunes on outlawed pipes holding their bladders. That never happened but I am constantly reminded in moments like these that I should have peed first.
I will probably talk more about Lucretius in future newsletters because the philosophy he writes about has been influential in how I live as a dad to the Kartoffel. In the meantime there’s a podcast episode you can listen to here for Once Upon a Gene I was on once upon a time ago that was inspired by Lucretius’ writing. I was a guest alongside two other dads who are also advocates for their incredible children.
The very first time we discovered that there was anything in this world the Kartoffel didn’t like she wasn’t even days old. I opened a bag of chips in her presence. It is first on the list of things she has yet to forgive me for.
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.
Hallo Kartoffelkumpel,
Last time, the waiting room held us in suspension, balanced between silence and fear, denial and recognition. But waiting never lasts forever, because it is not the end. Until you are ready for the end you will be happy to wait, even if you don’t enjoy it. In this second part, the balance shatters. What had been whispered, doubted, and softened by reassurance becomes undeniable. And suddenly we are going through a door we know we’ll never get to walk back out of again.1
You Want My Advice?
The emotional weather of those weeks was thick and heavy, but largely unspoken.2 The kind of atmosphere that makes you speak in half-thoughts and finish each other’s sentences with silences. My wife would start to say something about Emma’s movements, and I’d redirect her gently.
I’ve always been pretty good in a crisis, probably why I got into the line of work I did, and so way back at the beginning, before there was even a diagnosis to worry about, I absorbed the idea that my role was to be calm. To steady. To reassure. I thought I was helping by becoming the ballast, the counterweight. So I practiced the voice of composure, lowered and even, the kind we would so often hear in waiting rooms and doctor’s offices. Bolstered by the advice I was readily given by many I borrowed a certainty I didn’t feel and offered it to my wife as though it could shelter us both.3
It’s fine, it’s nothing, let’s just keep an eye on it.
But the longer I held that pose, the more it pulled me apart. Each episode hollowed me a little more. I knew what I saw, but my words refused to match it. My wife spoke one language—naming what was happening—and I spoke another, one that was built on delay, on soft denial. I told myself I was protecting her from fear, but really I was protecting myself from saying it out loud.
My body told the truth I kept swallowing. The clenched jaw. The breath I didn’t realize I was holding. Knuckles whitening around the stroller handle. Fingers shaking as I clicked the buckle shut. Outwardly I was calm; inwardly I was frayed and flayed every which way. With some distance I can see now how unsteady I was. Split with one voice smoothing over the surface while the rest of me was quickly coming undone.
And all the while the episodes kept coming. As we would soon find out, epilepsy doesn’t wait for you to be ready for it. My wife’s videos multiplied. She’d pause them, show me the moments with the precise flick of her arms, the drained look after. “That’s not normal,” she’d say. And I’d look, and I’d see it. I did. We began to drift. She saw patterns, and I offered platitudes. A new distance grew between us, quiet and sharp. She was learning a new language while I was pretending not to hear it.
We’ll just keep an eye on it.
Because, I promised myself, if you keep very still…
A Language We Had to Learn
Now I don’t know exactly what happened because on this particular visit I wasn’t there but I do know exactly what Emma’s episodes looked like. I know how when it happens your eyes blink without the lids moving. How the air gets sucked out of your lungs and placed on the table before spilling all through the room. How the walls seem to heave and bulge in. How everything pauses. So I know that this time my wife didn’t have to explain or plead or show endless videos.4 This time, the doctor saw it for herself. And I’m sure her professional composure flickered, for just a moment.
Suddenly we had referrals, phone numbers, instructions that felt both impossibly complex and terrifyingly simple.5 We set up the appointment. The door we’d been waiting outside was swinging open.
What happened next exists in my memory like a series of photographs taken from a moving train, in fragments of moments, blurred at the edges, the sequence not always clear.
My wife driving, me watching the GPS wishing it would actually help me navigate my own dread. Emma in the backseat, awake because we’d been told to keep her sleep-deprived. I know I’ve spent quite a bit of your time here convincing you that I had no clue what I was doing as a new parent, but I was pretty sure that keeping your kid from sleeping was the opposite of parenting.
I kept rubbing the sole of Emma’s foot, she hated it but it did the trick and kept her awake each time. She has still never forgiven me for this.
The neurologist had kind eyes. “We’ll need to run a test,” she said. Back down the hallway. Into a small room.
“It’s called an EEG.” Electrodes pressed like flowers into Emma’s scalp. A room lit in sterile blue. Machines humming their quiet intent. It lasted an hour, which I know now is laughably brief for anything definitive.
The EEG finished. The electrodes came off, we went home. A few decade-long days later we got a phone call.
“We want her to be admitted today.”
Today.
The word landed between us like a stone through glass. Not next week, not when we were ready, not after we’d had time to process what we’d just witnessed. Not after I had time to apologize to my wife for not showing that I believed her all those months. Why does ‘I’m sorry’ take so damn long to say? Entire lives have been lived between that ‘I’ and ‘y’.
I and…why?
Today.
My wife was already packing. Diaper bag, bottles, medical cards, socks. Her hands precise, already moving toward the version of herself this new world would require. More images flash in my mind of Emma in a hospital gown too large for her, the air thick with that damn antiseptic uncertainty. The shape of my wife’s hand holding mine as we drove back to what would become our new home away from home.6
The Other Side
Later, much later, we would learn that our pediatrician had never encountered Emma’s condition in her decades of practice. She had done exactly what she’d been trained to do, followed the protocols that work for most children, most of the time. It wasn’t her failing—it was the system’s, the way certainty is supposed to work in medicine, the way we’re taught to trust in the familiar patterns until something unfamiliar breaks them open.7
I sat in that hospital room and watched Emma sleep. She was still Emma, still the baby who melted into my chest when I held her, still the one who could calm me with her chattering and the way she’d turn toward my voice with a look at me with a face somewhere between disappointment and disgust. But there was also a way about her that was becoming something else, something that required machines and specialists and words and procedures I was going to have to learn.
There are lots of cliches about opportunity, and knocking, and doors. The door that opened for us still has lots of opportunities but they aren’t the ones we wanted, even if they are the ones we need. And now we are on the other side. We didn’t even have to knock.
I know we’ll never get to leave the way we came in.
Those too many chairs and indifferent clocks are already waiting for the next name to be called. And maybe, if the people sitting in them hold very still…
Until next time stay safe, stay kind, and know that you are appreciated.8
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!
Footnotes are back because pro-footnote comments were more voluminous than anti-footnote comments and this is a shabby utilitarianism production here. You want them gone again? Let me know.
There is a nothingness to the words we would use when we are living their concept, it is not until after we have moved through the fire, scathed, that we are free to use what words we will. So much of what we go through feels like little more than something to go through until we have gone through it, then the words come.
There is a much broader and deeper conversation here about inter-generational transmission of acceptable behaviors compounded by cultural norms surrounding how men and women are ‘supposed’ to respond to things. It is an important conversation that deserves much more nuance than can be afforded to it here, but if you have thoughts about it now please let me know.
This was also our first real introduction to HealthcareHoldMuzak™ (which is actually known as MOH, thank you Alfred Levy). Some of my favorites are this one and this one and this one and of course THIS ONE. Share your favorite music to disassociate to while on hold!
I understand that the narrative as I have laid it out here has my wife taking on a more instrumental rather than embodied role. That’s because this is my memory, not hers, and I wouldn’t presume to know what was going on inside her head at the time (though we have talked a great deal about it). I am respecting her story by not assuming it is also mine, y’all should encourage her to start her own blog (I’m looking forward to hearing how much she loves me telling you all to do that).
There is a hefty dose of ‘parents vs doctors!’ rhetoric already streaked across this community but I want to be clear that I am not blaming the doctor. I did then, but I am not now. To start, blame requires the absolute minimum amount of effort and once I sat and reflected for any amount of time it was no longer an answer. Secondly it completely externalizes the locus of control in often the least productive way and so functionally achieves nothing. Third, it is far more complicated than just ‘It was the doctor’s fault’ in most circumstances (straight medical malpractice notwithstanding). It’s more complicated than even just putting it on ‘the system’ because what the heck does that even mean? Most of this comes down to fundamental understandings of what is real, how or if we can even know what is real, what it means to be human, and how we are supposed to live. And if you have clear, concise answers to those questions that can be applied universally without any danger of marginalization or misinterpretation there will be several religions and philosophical schools of thought (literally all of them) who would be very interested. I don’t. So I am doing my best to live with and understand people instead of blaming and cuttingthemoff. Yeesh this probably needs a whole blog post on its own, maybe a whole podcast series…
Around this time 8 years ago we were dwelling in a sort of antechamber, where fear flickers in silence, denial translates into reassurance, and the body knows what the mind isn’t ready to say. Waiting rooms are built to disguise time. They’re meant to feel temporary, harmless, invisible. But waiting is its own kind of time, one that holds you in fluorescent suspension, never quite before and never quite after.1
Indifferent Clocks
There’s a room with too many chairs, all facing nothing. A television sputtering some live-action remake no one asked for. Somewhere, a child coughs. A printer whirs, stops, starts again. These rooms are made to be visibly invisible. Muted colors, indifferent clocks, a small reception window that reminds you someone is watching even if they aren’t in view and don’t respond to your inquiries. They hand you paperwork that you already filled out online on a clipboard that is too loud and a pen with the last gasp of ink. You’re not meant to be productive.
You’re meant to wait.
And you learn here that waiting is its own kind of time. Not before, not after. Just fluorescent purgatory. No arc, no plot. A clipboard clatters, a name is mispronounced and quietly corrected. Even your breath gets tired of being held. In these rooms, no one says what they’re really thinking. It might scare someone else. It might scare themselves. So we leaf through outdated parenting magazines, nod at strangers, check the stroller straps, check them again.
This place smells like soap and something else…maybe hope? Or maybe fear. No one ever told me how much hope feels like fear. It’s astounding how similar those two things are. Plus it’s hard to tell the difference when you’re mere months into fatherhood and the milestones aren’t tracking the way the book says they should. She sleeps in her carrier and I count her breaths without meaning to. One, two, three—pause. She wasn’t crying. That made me nervous. Why wasn’t she crying? She’d been crying on and off all night, all week. And now she was more peaceful than I’d seen her in a long time. Were we overreacting? She seemed fine now. I think to myself:
If I hold very still, the next thing won’t come.
Across from us, a toddler kicks his light-up sneakers against the metal legs of his mother’s chair. Red. Blue. Red. Blue. The hush of the room holds steady, like too much sound might tilt the balance. A door opens somewhere down the hall. Not for us, but I sit up anyway. Reflex.
The nurse calls a name and the woman with the blinking-shoed child collects her things. The room folds around her absence. Internally I waffle between hoping we’re next and getting all of this over with; and wishing the next name will never be ours, they forget to call us completely, and we go home like nothing happened. Or has been happening. Every night.
I try to read the one of those magazines they put out for—us? What parents are actually reading these? The words blur but I’m pretty sure they’re spelling out a-n-x-i-e-t-y. Tummy time. Milestones. Smiling babies with steady eyes. All the things the Kartoffel isn’t doing.
The door opens again, and this time it is our name they call. I lift Emma’s carrier, careful not to wake her, and we follow the nurse down the hall. The lights stretch out ahead of us, a tunnel of dread leading somewhere I’m not sure I want to go. But my feet move forward anyway, because that’s what you do in these places. You wait, and then you follow the voice that calls your name.
Behind us, the blue chairs wait for someone else to count breaths, to flip through magazines without reading them, to listen for the sound of their own door opening. The room holds its breath, suspended in that particular quiet that comes before everything changes. As we sit in our new room I think to myself:
If I hold very still, the next thing won’t come.
Right?
Inside the Thing
The next thing didn’t come then, because it was already there.
That’s what I see now, looking back. Not denial, not ignorance, something less precise. When your body knows first, and your mind spends weeks catching up.
My wife noticed it first. How Emma’s legs were a little too weak. The way her eyes were always a little too glossy. And then, the way her arms would suddenly jerk upward in these brief, blink-and-you’d-miss-it rhythmic clusters, her body folding in on itself like she was trying to protect something small and vital inside her chest.
“This isn’t right,” she’d whisper thinly. I’d watch Emma’s face during these moments, searching for signs of distress, but at this stage she seemed almost peaceful afterward, as if the strange movement had released some kind of pressure.
The pediatrician offered the familiar reassurances: reflexes, gas, nothing unusual, babies are still learning themselves! And maybe that was true or maybe I just wanted it to be. In spite of this I found myself watching her more closely, holding her longer. My arms adjusted to her, unthinkingly. My hands stayed an extra second beneath her head. Her body seemed to ask for more support, as though it were built of different materials.
The episodes became more frequent. More defined. My wife started filming them, collecting digital evidence, trying to name what no one else seemed able to see.
“This keeps happening,” she’d say. “Look at this one, it’s the same exact thing!”
I wanted to believe the pediatrician. I wanted to believe in Emma’s smile, in the innocent individualism of baby development. But watching the footage…
We brought the videos to the next appointment. The pediatrician smiled again. Warm, practiced. “I’m not concerned,” she said, her voice kind but certain. “She’s expressive. First-time parents often worry.”
And yet the worry remained. Not a loud, panicky, sharp worry. Just steady, like a ringing in your ears that you eventually start hearing in your bones.
Other babies were learning to lift their heads, push up on their arms, look around like small explorers. Emma tried, but her efforts carried differently. She’d lift her head for a moment, then let it drop back down, not in frustration but in a kind of resigned exhaustion that made my chest tighten. She seemed to tire faster, fold in deeper. Her body worked differently, even if no one else could see it. I think to myself: If I hold very still…but it wouldn’t matter because we were already inside the thing.
All we needed was the door to start swinging.
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’m trying something a little different. As we make our approach to our Pachyversary the words that are coming to me are more narrative, and so, I thought that this week instead of giving you one big long post to read I’m going to break it up into several parts. I’m not sure how many yet but for now it’ll mean shorter but more frequent posts.
I will probably also have fewer footnotes as many people said they found them distracting. As always, please send me any feedback you have!
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!
(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 symbolof 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.
Every bit of support helps and we appreciate it more than words can say!
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. ↩︎
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. ↩︎
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.” ↩︎
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. ↩︎
It’s ‘The obstacle is the way,’ not ‘The obstacle is a blessing.’ StoicBros come at me. No, really, I’d love to discuss. ↩︎
Quiet shout out to those who, while wishing to remain anonymous, have lent me their eyes and ears while writing on this sensitive topic. ↩︎
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). ↩︎
Finding connection through stained fingers and feeding tubes
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.
This was originally published in The Memoirist, my Medium friends can read this story over there as well.
I thought it was blood at first.
But the most vibrant kind of blood I had ever seen. Then I remembered what we were feeding the Kartoffel.
There is a particular shade of magenta that exists nowhere else in the world but on the fingers that have just fed a baby puréed beets. It’s the color of effort and mess and nourishment all at once. A stain that announces itself with all the verve we had even then come to expect from her. One that refuses to be scrubbed away easily. Some days, I would wear this color for hours, having been unable to immediately wash my hands in the small chaos that follows feeding time.
The beets would stain her lips too, leaving a perfect ring of fuchsia around her mouth like some avant-garde lipstick experiment. Sometimes they’d stain her chin, her bib, shirt, shorts, socks, the walls… Once, a droplet landed on her eyelid when she turned suddenly, giving her the appearance of having applied the world’s tiniest dot of eyeshadow. I chuckled quietly while she gazed at me with disapproving eyes.
There is intimacy in the way feeding connects two people through substance and sustenance. Her hunger and my response. My offering and her reception. The stains on both our skins telling a story of nourishment exchanged.
The Origin of Kartoffel
We called her Kartoffel before we knew there would be words like “hypotonia” and “global developmental delay.” Before geneticists and neurologists and a host of other –ists entered our home with the force of unwanted visitors who nonetheless must be graciously hosted.1
Kartoffel. Our little potato. Round and soft and warm in those early months, with her cheeks like small pillows and her arms folded close to her chest. There was something so satisfyingly whole about her presence, so complete in her potato-ness. The nickname arrived without much thought, first as a joke, then as a term of endearment whispered against her fontanelle while she slept.
“Ich liebe dich, meine kleine Süßkartoffel,” I would say lifting her to my face in the mornings:
I love you, my little sweet potato.
But the more I used it the more it fit. Potato:
humble root vegetable
nourishing staple
thing that grows quietly underground before being unearthed
Thing that transforms with proper tending
Thing that persists.
Plus I find all of the potato-based nicknames cute so it’s a win all around.2 She was a potato before she was a patient. This matters somehow, though I can’t always articulate why. Perhaps because the nickname carved out a space that belonged only to us, a designation that had nothing to do with medical necessity and everything to do with simple, absurd affection.
Nicknames are curious things. They circumvent official documentation. They refuse clinical precision. They name not the thing itself but the relationship to the thing, the way a person is perceived through the lens of love. It’s something that undeniably refers to her and yet we’ll never see it in a chart or billing sheet. That’s special.
The Rhythm of Nourishment
Feeding her was never simple, even before the tube.3 There was always a negotiation happening between her body’s capabilities and her hunger, between our desire to nourish and her ability to receive. But there was joy there, too, in the success of a mealtime where more food went in than came back out. She so loved eating that it was usually our first sign that something was off when she wasn’t enthusiastic about it. Either way it was a sometimes serious, sometimes silly, always sacred thing that I got to do with her.
The rhythm of it became almost hypnotic. Spoon, mouth, wipe, wait. Spoon, mouth, wipe, wait. Something between a poem and slapstick comedy. Sometimes I would find myself swaying slightly as we sat together, as if keeping time to music only we could hear.
There are moments in feeding a child when you forget yourself completely. When your attention narrows to just this path of nourishment from bowl to spoon to mouth. When her enjoyment becomes your only metric for success. I took too long in between bites once and she shouted, as if announcing my incompetence to the room, then she eagerly leaned forward for more. In such moments, I too was fed.
Feeding becomes a conversation without language. Her eyes said yes. Her tongue played translator between the world of flavor and the world of feeling. Her hands conducted an orchestra of enthusiasm or refusal. We developed our own dialect of joy spoken in the language of slipped spoons and nodding into purees.
The change in how joy must be read came with the silence of the feeding tube.
We held off on getting the g-tube for years. We were determined that if we just did enough of the right therapy, adjusted the medications just so, and really really really4 wanted her to, she would keep her ability to eat by mouth. But it was taking her hours to finish a few meager ounces, we were exhausted, she choked more than she swallowed, and I have never had a great interest in performing the Heimlich maneuver. She would get the tube.
I wept.5 Not in front of her, but later, in the shower where crying feels less consequential somehow. It felt like an admission of defeat, though I knew, rationally, it was anything but. It was, in fact, a victory of sorts. We had found another way to give her food and water and medication when the conventional route proved too difficult and too dangerous.
Yet the intimacy remained, transmuted into new forms. I found myself still talking through meals, still watching her face for signs of satisfaction or discomfort. And we developed new rituals. Venting her upon connection and listening for ‘tummy toots,’ her coughing at just the right moment to shoot stomach fluid into my face, and sometimes I would taste the purées myself, then kiss her cheeks so she could smell the food on my breath.
I hate beets. Always have. But this is what love looks like to me: becoming the beet-breathed bridge between your child and the experience they cannot access directly. Love is not a spontaneous gift, it doesn’t just happen and its not something you just can’t help but feel. It is intentional. It does not lift us out of our messy imperfect every day life. It digs us further in. Roots us. Covers us in beets.
The Geography of Care
There is a peculiar geography to caring for a medically complex child. The landscape is your child’s body, and you must learn its contours with a precision that feels almost invasive. You become a cartographer of breaths and seizures, of bowel movements and skin breakdowns, of the subtle shift in muscle tone that signals distress before any sound emerges.
The closeness that caregiving demands collapses all traditional boundaries. I know the exact sound of her swallow. I can distinguish between three different types of mucus and maybe twice as many types of poop. I can feel, with my fingertips, the precise spot on her skull where discomfort radiates when her hair is too tight.
This proximity is both strange and holy. Strange because it defies all normal parameters of relationship, even those between most parents and children. Holy because it consecrates the mundane tasks of care. Suctioning becomes sacred, bathing becomes a blessing, repositioning becomes reverence.
She knows my hands more than my voice
This realization came to me one night as I adjusted her sleeping position for perhaps the fifth time. Her body responded to my touch without waking, shifting subtly to accommodate my guidance.
The clinical narrative attempts to capture her in terms of deficits and diagnoses. But there is another story, told in nicknames and jokes and food stains. This counter-narrative reminds us that she also:
communicates displeasure with remarkable clarity and precision for someone without words (usually directed at me)
I have learned to read her without words. Without typical cries. Without the usual landmarks of development that guide most parents. Instead, I read micro-expressions, the tension in shoulders, the pattern of eye movements. This, too, is a form of literacy.
Colors of Memory
Recently she wore a shirt the exact color of beets. I didn’t choose it for this reason it was simply what was clean and weather-appropriate, but when I saw her in it, reflected in the car window as we packed up for therapy, the symmetry struck me. The deep magenta fabric against her pale skin, like those stained lips from years ago.
Sometimes memory arrives not as story but as color, as sense-echo from a previous version of your life. The shirt reminded me of all those feeding sessions, all those stained fingers, all those moments of connection through nourishment. All of those thousands of hours of pleading with her, myself, and the Choir Invisible that she would be able to swallow just one more bite.
Last semester, I found a smudge of something purple on my sleeve after work. For a brief, disorienting moment, I thought it was beet purée from years ago, somehow preserved in fabric despite countless washings. It was actually ink from a leaky pen7 but the momentary confusion created a wrinkle in time where past and present overlapped.
I’ve had dreams where she’s chewing. Ordinary dreams where we sit at a table and she eats pizza or apples or birthday cake. I always wake from these with a complicated feeling. Not quite sadness, not quite longing, but a peculiar awareness of parallel lives, of what might have been alongside what is.
In the world we actually inhabit, I say “Kartoffel” and she turns her head toward the sound. Not every time, her responses fluctuate with her energy and how much I’ve pissed her off that day, but often enough that it feels like recognition. The nickname has roots. So does she.
There is an argument to be made that all intimacy involves some sort of loss. The loss of separateness, the loss of certain freedoms, the loss of who you thought you might be before this love arrived. But intimacy is also about what persists and reshapes itself around new realities. It’s about finding connection within the limitations, in the creative adaptations they demand.
I used to feed her beets with a spoon. Now I feed her formula through a tube. But still, every day, she eats something of me. My attention. My care. My continuous presence. And I, in turn, am filled by her existence—by the way she has expanded my understanding of what it means to communicate, to adapt, and to love.
The beet stains linger, just like the nickname. Neither was part of the plan. Both are part of the story.
Cheers,
[kartoffelvater]
I hope you enjoyed this post. Don’t forget to check out the original article over at The Memoirist, a fantastic resource for exploring the creative stories unpacked from the nostalgic hope chests of our lives. Be sure to visit them!
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!
Something I think about often is just how much our ‘circle’ has grown with professionals. Growing up there was only 1 or 2 people who had become ‘part of the family’ that weren’t life-long friends of my parents or neighbors (I feel particularly lucky that I have always had the most excellent neighbors, even to this day). But with the Kartoffel, there are so many doctors, nurses, therapists, administrators, you name it, who aren’t just ‘part of her care team’ they have become closer to us than some actual family members. Hmm, definitely want to write more about this… ↩︎
Tater, Tater Tot, Tot, Tatie, Tottie, Murph, Murphy, Spud, Spuddy, Spuddy Buddy, Spudnik, Tuber, Mash, Petite Patate, Chip, Couch Potato, Hot Potato, Sweet Potato, Fry, Small Fry, Salty Fry, Crinkle Fry, Soggy Fry, Russet, Red, The Great Yukon, Yukon-Do It, Yukonovich, Idaho, Pomme…we are accepting more if you have them please email us. ↩︎
Not the time for it, but our post-natal care was…subpar…and part of that was due to the lackluster support around feeding the Kartoffel which resulted in our OB-GYN yelling at the staff in the hall for taking such terrible care of us. With this, and one other, exception we have had absolutely excellent nurses. I’m not a yeller, and normally don’t condone it, but whew, when a medical professional full-throatedly yells at other professionals to be better humans and care for patients as people not just numbers on a chart, it is a thing to behold. ↩︎
Hope so often finds itself adrift between fantasy and despair and in so doing we end up mistaking desire for determination. ↩︎
I do, and have over the years done, this a lot. So much, in fact, that my eyes have developed a condition where they do not produce their own oil anymore. When I saw my ophthalmologist about it she said, “Sometimes this can happen if you cry a lot. Have you had reason to be crying much these past years?” She obviously was not familiar with my work, aka the work of love that it is to have a child like the Kartoffel. I find myself blinking more frequently than normal and also find particles stuck in my eyes often. But what am I going to do, cry about it? It wouldn’t help even if I did. But also, yes I still weep, frequently. ↩︎
If there is one thing she has been blessed with an abundance of it is uncles who are rowdy, raucous, and entirely devoted to her. Very few things on Earth get her happy attention more than her uncles, and I’m not sure who loves who more. ↩︎
I enjoy the actual act of writing, not just the spirit of it, alas my penmanship is far outstripped by the quality of who I write about most often. I compensate by buying pens and notebooks and leaving pens in pockets and am rewarded by frequent leaks from said pens. ↩︎
Our Little Kartoffel 