The Space Between

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]

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