Motherhood wasn’t supposed to look like this. I pictured birthday parties, first days of school, messy ponytails after soccer practice, ya know normal. I didn’t picture sitting in hospital rooms, learning the names of bacteria that barely anyone can pronounce, or waiting for a call about whether a brand-new therapy even exists to help save my child’s lungs or life. Parenting a child with a chronic, rare disease is breathtaking in ways no one can prepare you for — sometimes beautiful, sometimes terrifying, always heavy with love.
💕 Learning to Breathe Through the Hard Days
Some days I hold it together. Some days I fall apart. Most days it’s a silent battle in my head.
The weight of treatments, appointments, infections, and “what ifs” can feel crushing. I’m scared more often than I let people see. I’m scared of this resistant bacteria in Jentri’s lungs. We’re still waiting to hear about phage therapy, and the waiting is its own slow torture. What if they can’t find one that works? What if there’s no answer? I can’t even let my mind go too far down that road because the fear is so big it feels like it could swallow me whole.
Yesterday, we went to church for the first time since she was admitted on August 14th , and I cried through the entire service. I’m trying so hard to give this to God — to trust Him with Jentri’s life — but faith doesn’t magically erase fear. Sometimes it’s just tears and whispered prayers: please let her be okay, please show us a way forward, please let them find a phage.
I also get frustrated. People mean well, but they say things like, “At least she’s not fighting cancer” or “She looks fine — you guys have such a good life.” And yes, I know there are kids fighting unthinkable battles, and yes, we are blessed in so many ways. But this is my reality. This is my child’s life. This is the fear I wake up with every day. Comparing suffering doesn’t help — there will always be someone who has it worse, but that doesn’t make this any less terrifying for me ——or her. Just because she can walk, talk, eat, and even play sports doesn’t mean the unknown inside her body isn’t gut wrenching. People don’t see the daily treatments, the medication schedules, the specialist calls, the middle-of-the-night worry or the arguing with a teenager trying to get her to understand how important her vest and nebs are to her. It’s not a cold that just goes away, there’s not a cure, hell there’s not even full on directed treatment for Primary Ciliary Dyskinesia—— only treatments that we “borrow” from other diseases. And don’t get me started on insurance.
🌸 The Silent Grief of Parenting Through Medical Uncertainty
There’s a grief that lives quietly in all of this. It’s not dramatic; it’s just always there — grieving the carefree version of motherhood I thought I’d have, grieving the simple things other families take for granted. I grieve not knowing what the future holds. I grieve every time a new culture comes back with something scary. I grieve the innocence of just assuming my child will be healthy.
That grief doesn’t mean I’m hopeless or ungrateful. It means my heart is adjusting to a life I never planned for — one that’s beautiful and full of love, but undeniably heavy.
🤝 Why Rare Disease Moms Need Community (and How I Found Mine)
For a long time, I felt like nobody really understood. Friends love us, but unless you’ve sat in a waiting room praying your child keeps breathing, it’s hard to get it.
That’s part of why I started Breath in Bloom Collective. I needed a space where moms and dads like me could feel seen — where we could share stories, cry, celebrate, and not feel so isolated. What started as a small awareness project became a lifeline. Every shirt, every awareness story, every message reminds me: we’re not alone. Just last night I had a fellow PCD Mama send me a prayer about Jentri and this resistant bacteria and whew when I say I needed it——I needed it. Thank you Shelby!
If you’re a mom on this journey, here’s what I’ve learned:
- Find your people. The ones who just nod because they get it without you having to explain.
- Share your story. It’s healing for you and it gives hope to someone else.
- Celebrate the little wins. They matter more than most people will ever understand.
🌟 Holding On to Hope
This life is a strange mix of love and fear, grief and joy, heartbreak and hope. Some days I feel strong; other days I’m scared and frustrated and bone-tired. But even when the fear feels huge — when I’m waiting for news about a therapy that could change everything, when people minimize what we’re going through, when I feel invisible in my worry — I know we are not walking alone. God is here. Our community is here. And love keeps us moving forward.
To every mama in this fight: I see you. I know the nights you lie awake afraid of the next infection or appointment. I know how it feels when people dismiss your pain because “someone has it worse.” I know the faith you cling to even when it wavers. You are doing something incredible — loving and protecting your child in a world that doesn’t always understand. Keep breathing through the hard days. Keep finding joy when it feels far away. Keep hoping. You are not alone.
-Kursti, Founder of Breath in Bloom Collective; more importantly Jentri’s Mama
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