A Letter to the Mom Who Just Got the Diagnosis

Dear Mama,

I see you. Standing there in that cold hospital room bathroom muffling cries facing the mirror, maybe on your living room floor feeling shattered or in that specialists' office holding your phone with shaky hands and a heart that feels like it just cracked in two. Maybe it was the words Primary Ciliary Dyskinesia, Atypical Cystic Fibrosis, CFTR-Dysfunction or another rare condition you’ve never even heard of before today. Maybe you feel relief because after years of searching, you finally have a name. Or maybe you’re drowning in fear, grief, or guilt, not knowing what comes next. You only thought the unknown was the scary part.

However you're feeling, I want you to know this: you are not alone.

I remember that moment. I remember hearing the words, Googling them with trembling fingers, crying over what I found, and wondering if life would ever feel “normal” again. I remember questioning everything — from how this could happen to my child, to whether I had the strength to walk the road ahead, or could I have prevented this?

But here's the truth I didn’t know then, and maybe you need to hear now:

You were chosen for this child for a reason.

You have a strength in you that will rise — even when you’re exhausted. You will learn to advocate like a warrior, love like never before, and navigate hospital visits, medications, and therapies with a fierceness you didn’t know you had. Some days will be so heavy. Others will be full of unexpected joy. But slowly, you will start building a life where both can exist — the hard and the beautiful.

Let yourself cry. Let yourself grieve. But also — let yourself hope. Your child is still your baby. Their laugh still lights up your soul. This diagnosis does not define them, and it doesn’t define you either.

And when you feel like no one understands, come find us. That’s why I created Breath In Bloom Collective — for moms like you and me, raising medical unicorns in a world that often doesn’t understand them. You’re now part of a community that gets it, and I’ll be cheering you on every step of the way.

You’ve got this, mama. And we’ve got you.

With so much love,
Kursti
Founder of Breath In Bloom Collective & Mama to Jentri, my rare warrior