đź’™ The Little Wins We Celebrate (PCD + Atypical CF Edition)
When you're raising a child with Primary Ciliary Dyskinesia and Atypical Cystic Fibrosis, the victories we celebrate might not always make sense to the outside world.
But in our world?
They’re everything.
We celebrate when a stubborn cough finally quiets down — even if just for a day.
When we don’t have to cancel plans, or warn family members/friends because of yet another respiratory flare-up.
When she gets through her airway clearance without coughing fits that hurt her throat or telling me, “Mom, I’m so tired of this.”
We celebrate a clean sputum culture.
We celebrate a chest X-ray or CT scan that hasn’t gotten worse. or when her CRP levels are within normal range.
We celebrate when exhaustion doesn't take her out for the whole day or when she is able to play an entire game of volleyball without asking to sub out.
We celebrate when her sinuses aren’t packed or when she says, “I actually feel good today.”
I’ve learned that with these diagnoses, progress isn’t always big and dramatic.
It’s subtle. It’s slow.
It’s in the way she smiles after a neb treatment or the freedom of a morning where she can breathe just a little easier and not so tight.
Sometimes, it’s not about gaining ground.
It’s about holding it.
And as a mama, I’ve had to learn how to see those wins and honor them — even when no one else notices or when it seems like no one even cares.
Because behind the meds, the treatments, the appointments, and the hospital admissions.
There’s just a girl trying to be a teenager. A girl trying to be normal.
And I will celebrate every single moment she gets to do that.Â
To the other parents walking this rare, complicated road — I see you.
I see the strength in your daily routines, the hope behind your exhaustion, and the quiet victories that most people will never understand.
You’re doing amazing.
And your child?
They’re a warrior.
We don’t take a single breath for granted over here — and that, in itself, is the win.
With so much love,
Kursti
PCD + Atypical CF Mama | Founder of Breath In Bloom Collective
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(Jentri, age 11 in Key West)
1 comment
This hit me straight in the heart. My daughter, Arabella, has POTS and my son, Luca, has asthma, so while our path looks a little different, the feelings are the same. The little wins — a day without dizziness, a breath without struggle, a moment where they just feel good — they mean everything. I see so much of my own heart in your words. Thank you for sharing your journey so honestly and beautifully. It’s comforting to be reminded that we’re not alone, even on the hardest days. Sending so much love to you and your brave girl — and celebrating every single breath with you 💛