On loving a child who exists outside the margins of medical documentation
Hallo Kartoffelkumpel,
There’s a flamingo-covered notebook sitting on my shelf. You might have seen it if you’ve been to our house, its spine cracked, tabs sticking out, surface scratched from countless journeys into doctors’ offices and therapy sessions. It contains the “official” story of the Kartoffel: diagnoses typed in sterile fonts, test results graphed in black and white, medication schedules in neat columns.
Pages of acronyms and numbers that claim to map the terrain of her existence. But this notebook, with all its information, is only a fragment. A map that leaves out the rivers, the forests, the sky.
A map that misses the wonder of her.
The Invisible Cartography of Care
I’ve memorized every page of this notebook, can flip through it in my mind during those quiet nights when the house is silent except for the constant companion that is her feeding pump. Each page is a frozen moment. A neurologist’s scribble here, a list of questions to ask for next visit there, a therapist’s home program taped to the back, hospital discharge summaries folded roughly between pages, ID bracelets from past stays that we use as bookmarks.
These pages don’t just contain words, they contain entire rooms. Fluorescent lights buzzing overhead. The antiseptic smell clinging to clothes. The Kartoffel’s small body on examination tables while voices discuss her as if she were a puzzle to be solved1.
The notebook is necessary, indispensable even, but it is not her. It does not record the sound of her laugh, a soft gurgle that bubbles up when I tickle her foot. It does not chart the way her eyes, deep and searching, seem to hold a question no one can answer. It does not measure the weight of her head against my shoulder, or the rhythm of her dreams.
What is a diagnosis, anyway? A word, a category, a shorthand for something vast and unknowable. Pachygyria: a brain that folded too smoothly in the womb, its ridges and valleys too few. Lennox–Gastaut: a cacophony of storms that surge without warning. Quadriplegia: a body that does not move as the world expects. A plethora of others. These are truths, but they are not the whole truth. They are like leaves that have drifted down into a pond, sending ripples outward but never touching the depths.
Living in the Gap
There is an existential ache in this gap between the notebook and the truth. To live with a child like the Kartoffel is to straddle two worlds: the world of systems, hospitals, insurance forms, appointment schedules; and the world of the ineffable2, where love and grief and beauty collide.
The tension is constant, a low current beneath every decision, every day. It is not a tension that resolves, nor am I eagerly trying to force some resolution3. It simply is a fundamental part of living.
I used to talk to her about the notebook, holding up its many-turned pages that seemed to be desperately trying to escape. “This is what they think they know about you, babygirl.” She’d look at me the way she always looks at me, with that steady gaze that seems to say:
“How dare you speak to me.”
-the Kartoffel
Does she know these pages are a kind of love too? That they are the scaffolding we build to keep her safe in a world that doesn’t always make room for her? Or does she sense only the weight of it, the way it pulls us into rooms where her voice—her real voice, unspoken but profound—is drowned out by jargon?
I want to tell her that the notebook is not her story. That her story is written in the way she leans into mama’s voice, in the way her hand twitches when she hears the birds4 outside. But I don’t know how to say it. So I sing to her instead. Her breath softens and, for a moment, the notebook is just a thing on a shelf, irrelevant.
Of Knowing and Naming
There’s a deeper question here that cuts through the practicalities of caregiving:
What does it mean to know a person?
The notebook claims to know Kartoffel, to define her through careful documentation. But knowing is not the same as naming. To name something is to pin it to the setting board5, make it static. To know someone is to move with them, to dwell in their mystery, to accept that they will always exceed your grasp.
The notebook names the Kartoffel. I am trying to know her. And in that trying, I am learning to live with uncertainty, with the vastness of what cannot be contained.
This is not a heroic realization. It is not a moment of triumph or clarity. It is an ongoing reckoning, one that unfolds in the small rituals of our days. Wiping her face after a sneeze. Adjusting her chair so the light falls just right. Pushing her wheelchair around a car that decided to block the sidewalk. Her constant look of disappointment in my fashion choices6.
These acts aren’t recorded in the notebook, but they are where our life actually happens. Where I meet her not as a diagnosis but as a person, singular and unrepeatable. They are where I confront the limits of my own understanding, and where I find, again and again, that love is not about mastering those limits but about living within them.
The Persistent Beauty of the Uncharted
The notebook will always be there, it has already spilled into other notebooks, binders, whole filing systems7. It and its cousins will continue to shape our days, dictating appointments and treatments and the endless paperwork of caregiving.
But it will never be enough. It will never hold the way the Kartoffel’s presence fills a room, or the way her silence speaks louder than any report. It will never capture the absurd, tender, disorienting texture of our life together. The grief that catches in my throat when I least expect it, or the grace that arrives in the curve of her hand against mine, or the stubborn beauty of the city tree outside, its leaves trembling in the wind.
In my mind, I close the notebook now, its flamingo’d cover cool under my fingers. The room is dark, save for the soft glow of a plug-in fly trap8 across the room. The Kartoffel sleeps, her chest rising and falling in a rhythm older than words.
I think about the notebooks of other families, other lives, each one a partial map of something vast and uncharted. You’ve probably got one, or seven, on a shelf right now.
I don’t have answers to the big questions. Maybe they are in the notebook?
Probably not.
For now, I’ll read my books, pour over my maps, but I’m going to keep getting to know the Kartoffel.
Jot this down in your notebook: be well, stay gentle, and keep curiosity close.
Happy writing,
[kartoffelvater]
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- I have thought on more than one occasion that were I to be on the table like that I would very much feel like a specimen in an entomologist’s lab. There is much about her life that is Kafkaesque. ↩︎
- Ineffable and yet I can’t seem to stop throwing language at the wall of her life and seeing what sticks, the absurdity isn’t lost on me. It’s a wonder of language that we can, and will, identify things that can’t be expressed in words by expressing them in words. The way language has to snake around itself until you are all in knots is ever-present when trying to describe a reality like the Kartoffel’s. I will probably have to find some words to express this… ↩︎
- Who am I kidding of course I am, but less and less. Especially with the growing realization that the tension will only truly resolve at her end. ↩︎
- Those darn Greek Cheek parrots. Trust me, your hand would twitch, too. ↩︎
- Ah, there’s that entomological analogy again. We recently had a run in with a particularly aggressive member of the Blattidae family and it must have nestled into my psyche while writing this. ↩︎
- Just this past Friday she told me with her eye gaze device that she didn’t like how I did her hair, she described it as, ‘awful.’ Or maybe she was saying I was awful. Unclear. I’ll talk more about the device soon. ↩︎
- Shout out to MyMejo for helping to cut down on the clutter and communicate clearly. This is not a sponsered ad, I just think Ryan is a cool dude doing good work and his app is straight dripping fire, as my students would say. ↩︎
- It works very well as a nightlight, and sometimes catches flies and mosquitos too. I, again, don’t have a link for you, you’ll just have to visit and see for yourself. ↩︎
Our Little Kartoffel 
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