On Masks, Personhood, and the Performances of Care

Thank you for coming back—or for finding your way here for the first time. However you arrived, I’m glad you’re here.

Hallo Kartoffelkumpel,

Last post’s Halloween memories got me thinking about the idea of masks, not just as costumes, but as part of what it means to be a person. Below is a reflection on the origins of the word persona—and how caring for a disabled child makes visible what most of us forget: that we are always, in some way, performing our way toward being known.

She doesn’t like when things tug.

I pull the neck band of her shirt over her ears, careful not to catch stray hairs on the way down. I tell her we’re getting ready to go out, though we both know she doesn’t understand what “out” means the same way I do. Maybe she does. Maybe this script is just for me.

So much of this life is lived within a maybe.

Every act of care has its choreography. I’ve learned the sequence by heart: prep the meds, check the bag, adjust the straps, scoot the boot, smooth her hair, look her in the eyes. Somewhere in there, I slip into a familiar role. The calm father. The practiced one. The version of myself I know how to play. Most days at least. It’s strange how easily care becomes a patterned performance. There’s a rhythm to surviving this life that demands repetition, ritual, and, yes, costume.

The word costume led me to mask, which led me to persona. In Latin, persona means “mask,” the kind worn by actors in ancient plays. It’s also where we get the word person, and by extension, personality. The entire language of self begins in concealment. The first person was, literally, the one who wore a face for others.

Our most intimate sense of being arrives to us by way of performance.

But the ancient mask wasn’t meant to deceive. It was meant to clarify and to project. Its shape and mouthpiece clarified the character’s emotions and amplified the actor’s voice so the audience could see and hear. The mask didn’t hide the self; it made the self audible.

Sometimes I wonder if that’s what I’m doing when I speak for my daughter. Am I amplifying her voice, or speaking over it?

Her communication is minimal and bodily. Things like a blink, a tension in her jaw, the faintest smile that might mean delight or discomfort. I’ve become fluent in these signals, though my translations are always imperfect. When people meet her, they look to me to narrate what she’s feeling. I supply her lines. “She’s happy to see you,” I say. “She loves the lights.”

Do I give her voice, or do I put words in her mouth?

And what happens when a world built on voices can’t hear someone who doesn’t perform one?

I think about this when I meet new nurses, providers, or parents. I notice how their faces shift in the first moments of encounter. How they reach for a script, any script, that might make the silence less frightening. I do it too. I smile in a way I hope looks competent. Not overly cheerful, not pitying, just steady enough to reassure. It works. The interaction smooths. The performance continues.

But later, I sometimes wonder if I was performing for them, or myself.

We all wear masks. Some are heavy with habit. The smile that says we’re managing, the tone that signals we’ve accepted this. Some we put on to protect others from the rawness beneath. Others we inherit, like family heirlooms of composure.

Yet in caregiving, the mask becomes complicated. It’s not only about what we show or hide, but about what allows us to function. I’ve learned that too much unfiltered fear or sorrow can paralyze the routines that keep my daughter safe. Making ‘choosing joy’ the single load-bearing beam of my life can lead to repeated collapse. I can’t stay in awe or despair for long; there are meds to draw and alarms to check. So I perform calmness until it becomes real enough to act from. Maybe that’s what ritual is for, not to fake a feeling, but to make room for it.

There’s a philosopher1 who once described social life as theater where we’re always managing impressions, playing roles. He didn’t mean we’re liars. He meant that the stage is how we meet each other at all. Every face-to-face encounter is, in some sense, a mask-to-mask exchange.

Still, I can’t help feeling uneasy. I want my daughter to be seen as a person, not a performance. Yet the very word person insists that to be seen, we must wear something. A covering. A voice-shape. A presence that can be perceived.

What does that mean for someone whose presence is already so fragile, so easily misread?

Sometimes, in her silence, I see something closer to truth than my explanations ever reach. Her stillness isn’t absence. But because our language is built on performance, on sound, gesture, and expression, we call her way of being hidden. Maybe she isn’t hidden at all. Maybe we’re the ones behind the masks, too busy performing personhood to notice how much of it is invention.

When I think of persona again, I return to the mask as amplifier. The idea that what we wear for others might not only conceal but make audible. The father-mask I wear, steady, resilient, capable, has carried me through nights I couldn’t have survived bare-faced. Maybe it’s not inauthentic. Maybe it’s just one of the ways I speak.

But there’s danger in over-identifying with it. When the mask fuses with the skin, it can be hard to know where the voice ends. I’ve caught myself talking about oxygen saturations and seizures with an almost professional fluency, as if language could insulate me from the tenderness beneath. As if vocabulary were armor.

I think that a paradox particular to this kind of care is to love someone so wholly that you must sometimes perform yourself into being strong enough to keep loving.

What frightens me is how easy it is to forget I’m performing at all.

The word persona carries within it both the mask and the sound that passes through. Maybe that’s all we ever are: what passes through. Not the mask, not even the face behind it, but the trembling voice between the two.

Sometimes, late at night, I hear her breathing in the dark. The concentrator chugs, the monitor lights pulse faintly, her small exhale catching against the rhythm. I listen. There is no script for this part. No costume, no cue. Just the sound that keeps returning, steady and unresolved.

Just like me, steady but unresolved, just passing through.

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

Cheers,
[kartoffelvater]

Did this newsletter resonate with you? Let me 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! If you saw my face you would…

On Halloween Costumes and Other Performances

Thank you for coming back—or for finding your way here for the first time. However you arrived, I’m glad you’re here.

Hallo Kartoffelkumpel,

We’ve had a strange little stretch here. One of those weeks where time feels like it’s wearing someone else’s coat. Too big in some places, too tight in others. Mornings come with the weight of unspoken expectations, and evenings vanish in a puff of undone tasks. Still, in the middle of it all, there are these small, theatrical moments that shimmer oddly. Maybe that’s what nudged these memories loose. That and the fact it was Halloween…

The fabric rustled like a breeze through dry leaves.

Sharp and insistent it was a little too loud for such a quiet afternoon. The Kartoffel’s Cinderella gown shimmered faintly in the soft October light, all satin and tulle and imagined grandeur. The skirt alone was enough to overwhelm a small living room, let alone a child who spends most of her time outdoors strapped into a medical chair. We crouched beside her, maneuvering the layers around her arms and legs, trying not to jostle her too-vulnerable shoulders or hips. The tiara sat crooked on her head, as all tiaras should.

She stared at me with a bemused face. “How are you ever put in charge of anything?”

Her fingers flinched from the fabric’s edge. Textures are never neutral for her. Some days she loves all the different things to feel. Other days, the wrong touch can send her spiraling. We held our breath and offered the sleeve again. She blinked slowly and let us slide her arm through. If she were wearing shoes, one of them would certainly be missing by now in homage to her famous resemblance. But instead of glass slippers, she had her wheels. Grandpapapotomus had built her a carriage from a red wagon and PVC pipe, complete with orange and blue lights stretched into a pumpkin frame. It wobbled slightly and smelled like last summer.

She looked like royalty.

In the kitchen, mama double checked that meds would be ready to go when we got back. I grabbed our stick horses. We were ready to pull the princess. Outside, the leaves had begun their slow descent into rot. The sidewalk would soon be covered with paper ghosts and plastic bones. I caught my own reflection in the mirror we still haven’t hung: father, costumer, now horse. No mask, and yet entirely in costume.

Halloween is supposed to be simple: a little dress-up, a little make-believe. But with the Kartoffel, it’s never just pretend. Every layer of fabric seems to ask something of us. About what we show, what we hide, and who we do it for.1 I would soon be reminded how easily those performances spill from thought into action.

We joined our family, and the greater neighborhood caravan, outside at dusk. Parents with tired-but-it’ll-be-worth-it-for-the-memories faces, herding their kids in foam muscle suits, polyester witch hats, their plastic pumpkin buckets already filling. Someone shouted, someone tripped. The air smelled like sugar and a distant fireplace. We were part of it, and also not.

Navigating the sidewalk was a dance. Cracks, slopes, curbs, each one a small negotiation with her wheels. People made space. They smiled. A parent knelt down to compliment her gown, though she didn’t meet her eyes. Her tiara sparkled under the streetlamp like it was doing all the work of eye contact for her. I found myself narrating on her behalf.

“She’s excited,” I said, though she hadn’t moved much. “She loves the lights.” I wasn’t sure if she did tonight. “She loves your costume!” I needed her to seem like she belonged.

Every house we stopped at (which was exactly three) brought a new performance. We turned her toward porches, held out her bucket, said “Trick or treat!” in a bright voice. People smiled, too wide sometimes. They dropped candy into the bucket with exaggerated care.

“And who do we have here?” one woman asked, crouching low. “Are you Cinderella?” She blinked. I smiled.

“Yes,” I said. “With a custom carriage and everything.” She didn’t reply because she doesn’t speak. But I spoke enough for both of us. That was my role. Apparently, my mask can get chatty.

There is a particular kind of exhaustion that comes from a layered performance such as this. First you play your part as the cheerful, adaptive parent. Then you coach your child’s part, even if they won’t—or can’t—play it. Then you silently hope the audience sticks to their cues and is welcoming, smiling, but not pitying. Kind, but never condescending. Curious, but not interrogating. It’s the theater of interaction.

And then comes the real trick: pretending this choreography is mutual.

Inclusion, I’ve found, often requires the most performance from those already carrying the heaviest loads.

I watched another kid barrel down the sidewalk in a hot dog costume, what I think was supposed to be ketchup trailing behind him. No one asked him to smile on cue. No one needed him to “prove” he was enjoying himself. He just was.

And I—was I enjoying myself? Or just doing what I thought was required?

Sometimes I catch myself performing disability dad. The seasoned father. Competent. Patient. Always on cue. The one who jokes about feeding pumps while navigating doctor’s appointments and fielding insurance calls. The one who wears resilience like armor. It’s not a lie. But it’s not the whole truth either.

Not long ago, I found myself irritated with a front desk nurse when we’d rolled in with my daughter, who was clearly in need of space, time, accommodation. The nurse didn’t greet us or say anything about her hair or sunglasses.

“They’ll be with you shortly,” she said. She took our insurance cards and had me sign something.

I fumed inwardly. No warm smile? No ‘Aww, she looks beautiful’? She was paid to be there, wasn’t she? Didn’t she know her lines? As we left, I got an automated call asking for my feedback on the visit. I answered with every intention of letting them know the front desk staff was cold and distant.

And then right there in the parking lot I stopped. The Kartoffel looking up at me again with those questioning eyes, wondering who keeps putting me in charge of things. I felt the absurdity of it. I was asking the nurse to perform for me. I had a script, and she hadn’t read it. She wasn’t mean, she wasn’t anything other than professional. But she wasn’t what I wanted her to be, what I know she deserves everyone she comes into contact with to be like.

Wasn’t that the very thing I drew myself up against?

We all do it, I realized. We lean on our private expectations of how others should play their roles. Providers should get us in the room as quickly as possible. And then take as long as we need once we are back there. Therapists should anticipate our unspoken grief. Friends should know how to offer help without making us feel helpless. Strangers should be inclusive but never intrusive. But life isn’t a stage play.

No one has the full script.

And the ones I expect the most from? Other parents like me. I look to them for knowing nods, shared language, the right mix of humor and sorrow. And when they don’t deliver—when they seem too upbeat or too defeated, or too wrapped up in their own horrors, or not wrapped up enough, I horripilate. As if they’re letting the side down.

What a tangled web we weave. I want to stop performing. I want others to stop performing. And yet it seems I require their performance and they require mine. Maybe not all performance is false. Maybe some of it is ritual. And maybe ritual isn’t inherently a burden.

There is comfort in repetition. In preparing the gown. In carving the jack-o-lantern. In saying, ‘Trick or treat,’ even if it’s me saying it. Maybe ritual is one way we carve out meaning when meaning gets slippery. Maybe it’s how we hold onto community, even as we grieve its limitations. But it’s dangerous, too. I’ve felt it when disability advocate starts becoming my whole personality. When I forget I’m allowed to be confused. Or angry.

Or ordinary.

The more I cling to the performance, whether I’m being helpful or hindering, the more I fear what’s underneath.

And yet, being the Kartoffel’s dad isn’t a mask like that. It’s not something I put on. It’s who I return to when the crowds go home and the sound settles back into the floor.

That night I found her curled in mama’s arms, her body finally unbound from the costume, soft and still. The dress lay in a heap by the laundry room door. The house was quiet, the endless rustling of the tulle playing only in my mind now. But outside of my head there was no longer the sound of effort, but of rest. No more need to speak for her. No more performance.

The carriage leaned against the garage wall, one light still flickering. I meant to turn it off, but didn’t.

I left it glowing there, pulsing faintly in the dark.

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

Cheers,
[kartoffelvater]

Did this newsletter resonate with you? Let me 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!

Hollowed and Hallowed By The Waiting

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,

Lately, I’ve been thinking about how the world trains us to move. Always forward, always faster, as if meaning could only be found in motion. But sometimes life hands us stillness instead, and we’re left to learn a new rhythm, one that doesn’t rush or resolve, but simply holds. This holding is uneasy, luminous, and alive, and has a shape all its own.

A soft glow spills across the ceiling.

Dancing ribbons of light sway over the bed, cast by a night light that swirls over the BiPAP’s steady rhythm. I sit beside the Kartoffel, tracking her breath, each rise and fall a tender tether anchoring me. Waiting for us isn’t a gap, a mere pause to endure; it is the weave of our existence, threading through dread, love, and the stubborn hope clinging to her presence.

Time bends here in ways the world outside can’t grasp. Seconds bloat, heavy and vast, when her chest stutters, then shrink, fleeting, when her eyes drift like whispers across a still pond. Consciousness falters in this space, suspended between the past we’ve known and the possibilities we chase, scooping out the present until it feels like an empty pit of itself. Hope flickers as a distant spark, stress coils tight in my chest, and her laugh, as rare as rain here, dissolves hours into a single, precious note. I’d pay every sleepless night, every aching hour, to hold her stillness close.

Because what is waiting, if the waiting is holding her?

The toys keep watch around us. The comically oversized orca, the bear with a matching g-tube, Matilda the gorilla holding her diploma from when she graduated an early intervention program. All hushed companions in a quiet, ultimate devotion untouched by the world’s haste. Out there, clocks tick relentlessly, carving life into neat segments, chasing a presence that slips through their hands. Here, the ocean mural holds its breath, its Garibaldi suspended in a painted sea, while Emma settles. Alive, delicate, and undeniably mine. Waiting isn’t a path from here to there; it is flesh, raw and fierce, pulsing with her every wave. Time doesn’t march it unspools, slipping into a future that’s always becoming, never fully here. I’m caught in it, a father bound to her breath, my choices weightless, suspended by her waiting. I stall, watching, longing, until she drifts off.

Yet this isn’t mine alone. You, out there, holding your own child through nights that stretch too long, you know this weight. The muted strain of a room we share, yet don’t. Who can measure a wait that binds us to them, to each other? Perhaps it isn’t a waiting room we share, but the waiting itself is the room we sit in side by side.

Because what is waiting, if the waiting is community?

The world beyond rushes on with its other waits while here, fairness frays, and time twists itself into meaninglessness. If the waiting itself is the room we sit in, then its architecture is built on a death of time. This isn’t just a slowed clock; waiting excavates the present, strips it bare. It’s a warping of presence and a wrapping of the moment we inhabit. Consciousness, stretched toward what might come blurs the present into a haze of speculation. Even with the all the fancy words, this isn’t some abstraction for us parents, it’s the ache of watching her tremble, with our notebook’s cold tally, the endless hours on hold with vendors, the whitespace on the page of denial from insurance, the unanswered calls to specialists who hold her fate. We’re trapped, not by choice, but by love, our freedom suspended, our sense of being hollowed and hallowed by the waiting.

In this void, there’s a strange communion. The dread when monitors beep, the embers of hope when fingers curl, the nauseating realization that there might not be many corners left to turn on this long and winding road, experiences that are mine alone in a way that can only also be ours together. Our vigils, solitary in their intimacy, demarcate a collective space, a room without walls but made of waiting itself.

I lean close, kiss her brow, salt, struggle, and sweetness mingle on my lips. The roots of this wait dig deeper into me. Waiting distorts, yes, empties the present for a future we can’t grasp. But it’s alive with her fight, our defiance rising against the dark that dares too near. The world hoards days like coins; we cradle moments in this softer sacred season. The Kartoffel’s breath steadies, falters, steadies again, and we’re remade, our love outlasting every shadow.

What we have learned is that waiting, when rooted in unconditional love, is not an empty, passive gap, but an active, full, and meaningful state of existence. In this room, beneath our fragile sky, waiting is everything. The space between us is a testament to her, to us, unbroken. She is, we are, the waiting.

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

Cheers,
[kartoffelvater]

Did this newsletter resonate with you? Let me 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!

And still, I keep the watch.

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.

And still, I keep the watch.

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.

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.

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!

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.

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!

Oh God, If You’re Out There Can’t You Hear Me?

Part III: Chaos

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. Developmental delay.

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.

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!

This is Gonna Hurt Like Hell

Part II: Fracture

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.

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!

Hold On To Yourself

Part I: Finding

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.

My friends over on Medium can read this here.

Hallo Kartoffelkumpel,

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.

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

Cheers,

[kartoffelvater]

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