Let’s Walk For Awhile

A beginning. An introduction. A few words for those who’ve found their way here.

Hallo Kartoffelkumpel,

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.

In addition to our Sunday newsletter, today also happens to be Father’s Day. And so for the dads who are borrowing normalcy today, those that are the still point of their turning world, I wish you the quiet recognition that you are the father your child need. Not despite the complexity, but because of how you’ve learned to love within it.

“There are years that ask questions and years that answer.”
— Zora Neale Hurston

The Sidewalk and the Canopy

We’re walking down the sidewalk again. Me, pushing the wheelchair; her, staring up into the canopy of a plumeria tree that’s doing its best to belong in this suburban stretch of fake lawn and curb. Its waxy leaves catch the late light and shiver just a little in the breeze. She lifts her eyes, slow, shaky and unsure, and they hover for a bit, like a question.

I talk to her more than I talk to anyone else. Maybe it’s to fill the silence, maybe it’s habit. Early on, we were told to give her near-constant stimulation—that our voices, especially, would be some of the best therapy. So I’ve made her a steady diet of words: some real, some invented, many of them now returning to me, reshaped, to be written here. Half-conversations, metaphors, guesses. Things she might have thought.

I say things I need to hear out loud to believe.

The Kartoffel is not her real name, but that’s what we call her. Our little potato. The nickname arrived early, during a time when we didn’t yet know the full shape of things. She was soft and round and warm and wordless1¹. She still is, though the wordless part cuts differently now.

She has more diagnoses than you can fit into a carry-on bag but the primary diagnosis called is pachygyria²—an uncommon disorder in which the folds of the brain are too broad and too few. Her body is organized by a different logic, one the world rarely bothers to learn.

This Is for Her (and for You)

This newsletter, like everything anyone has ever written about anything, is about its author: me. But it is for her. Not because she’ll read it or be inspired by it, she likely won’t and wouldn’t be. It’s for her because writing it helps me become a fuller person, and by knowing more of myself, I can give more of myself to her. In that sense, it’s also for anyone else who has found themselves walking streets like these: parents of disabled children, caregivers, family members, medical professionals, friends trying to stay close without knowing what to say.

I don’t have advice, not really. I’m not here to offer inspiration or resolution. I’m not documenting a triumph. I’m trying to pay attention.

There are already so many places to get tips, tricks, and hacks—entire ecosystems of advice for caregiving, disability parenting, navigating the medical maze. Some of it is deeply helpful. Some of it, less so. But that’s not what this is. I wouldn’t know how to package our life into a five-step guide, even if I wanted to. The truth is, most of what we do doesn’t map neatly onto anything. It’s improvised, negotiated, constantly reworked in the moment. And what works one week might collapse the next. We live by rhythms more than rules.

Besides, I suspect you’re already carrying more advice than you can use. And not just the kind that arrives in pamphlets or protocols—but the well-meaning suggestions from strangers, the quiet judgments hiding in questions, the impossible expectations you’ve internalized just to keep going.

So no, this isn’t that.

But that doesn’t mean I’m not interested in you, or your child, or your days. It doesn’t mean I don’t want to talk, or listen. I just have to start from a different place. Because everything we read, we rewrite—we reconstruct it through the prism of our own experience, whether we mean to or not³. Nothing arrives whole and untouched. So instead of giving advice, I try to give attention. I offer what’s been real for us, with the full knowledge that it won’t be quite the same for you.

If you do write to me, I’ll do my best to answer—but always with this in mind: that what I can offer is not a solution, but a reflection. Not a map, but maybe a stone you can carry in your pocket, run your thumb across, and decide for yourself what it means. Writing these thoughts out has changed me. I hope—in some small way—that change might be for your good, too.

Too Many Lights

We have been on our journey with the Kartoffel for more than 8 years now. It was hard at the beginning, but you know what?

It is still hard now.

In the early days, we were desperate to find a community—anyone who might understand even a sliver of what we were going through after her rare diagnosis. We cast our net wide, reaching out, posting, joining, hoping to be seen, to belong. And we did find people—some of the best people—and I hope we became that for others too.

But these days, the impulse has changed. It’s less about gathering anyone who might listen, and more about listening inward, writing from the quiet center rather than toward the noisy edge. This space isn’t meant to rally or convince.

Nor will it be a source for specific updates about the Kartoffel’s condition.

One of the tensions I carry is wanting the world to know her—the real her—and yet also wanting to protect her from being laid bare under a thousand curious glances. I believe it’s possible to care deeply for someone without needing to see every corner of their life. This is a tension I’m still working out, and one I’ll return to in this space, probably more than once.

If a particular facet of her medical state fits in with a given reflection I’m writing I will include it as respectfully as my ability will allow. But if you are here just to see photos of the Kartoffel and get a play-by-play of her life, I’m afraid you will find yourself disappointed. As I said, this is for her, but about me.

If this evokes in you a strong desire to find the unsubscribe button, you would be in good company; the Kartoffel would unsubscribe from hearing me if she could. But I hope you’ll stay.

Staying with the Texture

So instead of offering conclusions or putting her on display, I return to what I can and want to do: Be near her, watch closely, and try to name things honestly.

Some days I think that’s all I’m doing: noticing the world with her, and trying to find language that doesn’t betray it. Because there is a texture to this life that resists simple meaning. There are missed appointments and bruised hopes and long waits on hold with insurance. There are nights full of seizures, and mornings where everything still smells like vanilla formula that spilled everywhere as I load the wheelchair and try again. There is hard, yes. But also soft. And awe. And absurdity.

And quiet grief housed within ordinary joy.

It’s no coincidence I’m sending this out on Father’s Day. I frequently hear that dads are the less visible parent (at least on social media) but the truth is more complicated, especially in the disability community. Perhaps because we live in a culture where the concept of ‘dad’ ranges from the comical to the contemptible⁴, perhaps because of the expectation that we must hold to the polite fiction of shared experiences, perhaps because my preconceptions about being a dad have been completely demolished by actually being a dad…perhaps for these reasons, or a million others, I’ve been thinking a lot about what the word father really holds, and how little space there often seems to be for its fuller shape. I mentioned earlier that while this newsletter is for her but about me, and that means fatherhood will show up here quite a bit.

There’s no single story here though. In addition to fatherhood I’ll be writing about disability, the moral fog of systems, the awkward kindness of strangers, and the bizarrely durable rituals that make up a day. There will be some theory, some beauty, and hopefully some moments that feel familiar in the deepest sense. I don’t promise to always make sense of things, but I do promise not to look away.

I don’t know if this is a question year or an answer year. But either way, I’m asking and listening. You’ve found your way here, welcome. Let’s walk for a while.

Until next time, be well, stay gentle, and keep curiosity close.

Grateful for you,
[kartoffelvater]

Plus, all of the potato-based nicknames are adorable: Tater-tot, Small Fry, Sweet Potato, Murphy…
We also call her a myriad of nicknames based on whatever activity we are doing but there are so many that they might warrant their own post. ↩︎
Diagnoses are a funny thing (not funny ha-ha, not funny like a clown). Sometimes they refer to a noumenological feature, sometimes to a reified object in and of itself, and at other times a qualifier of another distinct artifact of reality. Pachygyria is no different. This is a confound worth exploring on it’s own. ↩︎
Understanding may not be something we receive, but something we remake. This would then influence not only how we understand things in the moment, but how we remember them later, and then ultimately how we pass those memories off as advice and how we evaluate others within this self-made framework. I’ll come back to that in another piece, probably about the super-not-boring sounding topic of hermeneutic cognition. ↩︎
There is an entire style of humor named after dads, which comes with the not-always-funny reality that a) dads like to joke but also b) dads often are treated as a joke. ↩︎

Our Little Kartoffel