Living Between Wanting More and Needing Normal

We moved to Arkansas at the beginning of the year.

Not because we had it all figured out.

Not because life suddenly felt lighter.

But because we needed to be closer — closer to home, closer to Jentri’s medical teams, closer to whatever the next steps in this life might be.

And even then, nothing about our life is settled.

We’re still technically “traveling.”

Michael is on a contract position at the University of Arkansas (go Razorbacks).

We’re still living in our 44-foot fifth wheel.

Still living a life that feels temporary and rooted at the same time.

If that sounds contradictory, welcome to chronic illness life.

There’s this constant pull inside me.

The desire to do more.

To show our kids more.

To let Jentri see places, experience joy, collect memories, live as fully as she possibly can.

And at the same time — the ache for normalcy.

Whatever “normal” even means anymore.

I want routines.

Predictability.

Boring school weeks.

A calendar that doesn’t revolve around appointments, scans, admissions, or the looming what if.

But chronic illness doesn’t let you choose just one.

Yesterday Jentri had CT scans.

And the results brought that familiar heaviness back into the room.

There’s a new area of concern in her lungs — something that wasn’t there in August or September. A reminder that even when things feel stable, her body is always quietly fighting. In a couple of weeks, we’ll move forward with another bronchoscopy to see if the rare Enterobacter NDM is still there, still wreaking havoc, still refusing to let us rest easy.

That bronchoscopy will help us see what’s really going on.

It will tell us whether that bacteria is still present.

It may tell us if another hospital admission is coming.

Or it may raise new questions we weren’t prepared for yet.

On top of that, we’re now working through sinus issues — something that’s relatively common for PCD patients, but still overwhelming when it’s your child. We’ve started the process to determine if sinus surgery is needed.

I’ve learned that “common” doesn’t mean easy.

And “routine” doesn’t mean painless.

This is the space we live in — waiting rooms and conversations that start with “we’ll see.” Making plans with a pencil, not a pen. Learning how to hold our breath while still trying to exhale.

And yet…

In the middle of CT scans and bronchs and possible surgeries…

We’re also planning joy.

We’re planning Jentri’s Make-A-Wish.

Right now, it’s looking like the Bahamas.

And that sentence alone feels surreal to write.

How do you live in a world where one day you’re discussing lung damage and bacteria that shouldn’t exist — and the next you’re talking about turquoise water and salt air and a child’s wish?

The answer is: you just do.

You live in between.

Between hospital bags and bathing suits.

Between fear and hope.

Between wanting to protect your child and wanting to let her fly.

There are days I question everything.

Are we doing too much?

Are we not doing enough?

Should we slow down?

Should we keep going?

I want Jentri to live.

Not just survive.

I want her to see beauty, to laugh freely, to feel the sun on her face without her disease being the loudest thing in the room.

But I also want her safe.

Rested.

Stable.

And some days, those two desires feel like they’re pulling me in opposite directions.

So here we are — still traveling, but intentionally.

Closer to her care teams.

Closer to home.

Still mobile.

Still flexible.

Still learning that stability doesn’t always look like a house with a fixed address.

It can look like a fifth wheel parked near the people who know your child best.

It can look like contract work and temporary plans.

It can look like choosing proximity over permanence.

This season feels heavy.

It feels uncertain.

It feels like standing in the middle of too many choices without clear answers.

And yet, I’m grateful.

Grateful for another day.

Grateful for a child who keeps fighting.

Grateful for a family that adapts again and again.

Grateful for a life that, while hard, is still full of love.

We don’t know what the bronchoscopy will show.

We don’t know if another admission is coming.

We don’t know what the next few months will hold.

But we’re here.

We’re together.

We’re choosing hope where we can find it.

And for now — that’s enough.

With all my love,

Kursti-Mom to Jentri, Founder of Breath in Bloom Collective