Raising Siblings of a Medically Complex Child: The Balance No One Talks About

When you’re a parent to a child with rare illnesses like Primary Ciliary Dyskinesia and Atypical Cystic Fibrosis, everything shifts. The world becomes smaller. The schedule becomes rigid. The stakes feel higher every single day.

But there’s something not enough people talk about—the way it affects the siblings.

Brantleigh and Maveryk aren’t just watching this life unfold… they’re living it, too.

They come with us to every out-of-state appointment. Every flight, every hotel or families’ house, every hospital stay. We hop on planes every three months just so Jentri can see specialists. There’s no leaving them behind—they’re part of this journey.

They pack up their backpacks, help hold coolers of meds, and help carry bags filled with nebs, treatments, roll the CPT vest and medical supplies… because this is our life.

They’ve spent weeks at a time in the Ronald McDonald House, sleeping in unfamiliar beds, surrounded by strangers while their sister fights through another hospitalization down the street. They’ve missed birthdays, events, and childhood normalcy—not because they were sick, but because they love someone who is.

And even when we’re home, life isn’t “normal.”

There are rules most families don’t think twice about.

We avoid large enclosed gatherings.

We skip crowded places when we are able to or Jentri wears a mask.

We say no to some playdates, sleepovers, or even sometimes family visits—because one little virus could send Jentri straight to the hospital.

They’ve both learned how to put Jentri’s health first——recently poor Brantleigh didn’t get to celebrate her birthday until a month later because Jentri was hospitalized. They are troopers even when it means sacrificing their own comfort, fun, and freedom.

And that hits me hard.

Brantleigh especially. She’s my middle child. That alone comes with a unique kind of struggle—hand-me-downs, always caught between the oldest and youngest, trying to find her own space in a world that constantly pulls attention elsewhere. But being the sibling of a medically complex child amplifies that in a way that breaks my heart.

She’s so incredibly strong… but I know she’s felt unseen at times.

She’s asked questions like, “Why do we always do everything for Jentri?”

And it’s not because she doesn’t love her sister—it’s because she does. She just wants to feel like she matters just as much.

And then there’s sweet Maveryk—our littlest girl.

She’s already learned how to wait quietly (sometimes) while I speak to doctors.

She sees more than she says. She mimics the care we give Jentri and brings her toys or wipes her tears when she’s not feeling well.

She shouldn’t have to carry any of this—but she does.

These girls are warriors in their own right.

We do try to make sure to do stuff with just them when we can. Most recently we took Brantleigh and Maveryk to Universal Studios while Jentri was at church camp. They both got to ride their favorites multiple times and then we took them to a cool hotel and spent the evening in the lazy River! They loved it. And the joy on their faces brought me to tears.

They don’t have the diagnosis, but they live the lifestyle. And I say this not knowing really for Brantleigh as she isn’t symptomatic but Jentri’s team says we should get her genetics ran. So there’s that….always in the back of my mind.

They feel the weight of this life, and they carry it with so much grace.

Still, I worry every day that I’m not giving enough. That I’m missing moments. That while I’m advocating and fighting so hard for one child, the others are getting what’s left of me. That’s a guilt I carry with me always.

But what I want Brantleigh and Maveryk to know—what I pray they always hold onto—is that their love matters. Their sacrifices matter. They matter.

You are not second.

You are not forgotten.

You are the glue that holds us together in the storm.

This life is hard, yes. But because of you girls, it’s also incredibly beautiful.

To all the parents trying to keep everyone afloat while navigating the impossible—I see you. And to the siblings living in the shadows of rare disease: you are the quiet heroes of the story.

With love,

Kursti, Founder of Breath in Bloom Collective