What I Can Control: Attention, Connection, and the Power of Presence

Yesterday morning, Kora had her first seizure since February of 2024.

Fourteen months.

Fourteen months of no seizures.

Fourteen months of hope that maybe—just maybe—that had been her last seizure.

We let ourselves believe, cautiously, gently:

maybe we had crossed a threshold.

Maybe her little body was finally done with this.

But yesterday, we were back where no child or parent wants to be—riding in the ambulance to the hospital.

My fierce, funny, shining girl looked up at me

with that deep, quiet sadness—the sadness of a child who knows what it means

to be poked, monitored, measured again.

As her mother, I feel the ache rise in both of us.

The ache of hope cracked open.

The ache of wishing I could carry this burden for her.

The ache of knowing she just wants to run, laugh, and live—without seizures pulling her back.

And if I’m honest, the ache of being reminded that

I cannot control everything,

no matter how much I want to.

But here’s what I come back to—again and again,

today and every day:

✨ I can control my attention.

✨ I can control my connection.

✨ I can control the presence I bring into each moment.

I cannot stop every seizure.

I cannot control every signal in her nervous system.

But I can hold a dominant state of attention,

attuning myself to her body’s signals,

reading her energy,

and meeting her needs as they rise.

I can kneel beside her,

present and steady,

so she knows she is not alone.

I can notice the subtle cues,

the tiny shifts,

the whispers her body gives me

that tell me what she needs—before, during, and after the storm.

And though I cannot stop every wave from coming,

I can be there to catch her,

to soften the shore,

to remind her that she is not walking this road alone.

I will never stop seeking to understand her.

I will never stop tending to her wellness.

I will never stop trying, hoping, learning, supporting—all in the hope that one day, she can experience a seizure-free life.

Today, we let the sadness breathe.

We name the disappointment.

We feel it all, both of us.

And then, we remind ourselves:

She is not her seizures.

She is not a setback.

She is not broken.

She is Kora.

My wild, radiant, beautifully alive little girl.

And she is so, so deeply loved.

To every parent who knows this ache,

I want to remind you (and myself):

We cannot control every outcome.

But we can bring our whole, loving presence

into every moment we walk through together.

That presence is not small.

It is not powerless.

It is everything.