This story begins on May 1, 2024, just a week and a half after we welcomed our sweet Bastian into the world. We were still basking in the newborn glow — learning his sounds, his rhythm, the way he fit into our arms like he was always meant to be there. Life was full of nursing, snuggles, the occasional stretch of sleep, and learning how to navigate life with four children. Everything was calm. It was sacred. Then, the call came.

Bastian’s pediatrician informed me that his newborn screen had been flagged for cystic fibrosis. I didn’t know what that meant, I’d never heard the term outside of Grey’s Anatomy. She briefly explained what it was and how she had already put in a referral for a sweat test. She then reassured me several times that most babies who are flagged end up not actually having it. I nodded, even though she couldn’t see me. I wanted to believe her. I needed to believe her.

After that call, I did what many of us do in moments like that — I turned to Google. I wish I hadn’t. The words I read were sharp, heavy, and hard to unsee. Lung damage. Lifelong treatment. Shortened lifespan. Death. That word was the one that lodged itself in my chest like a stone. I sat in silence, staring at the words on the screen. The walls seemed to close in around me. And just a few feet away, Bastian was sleeping peacefully, his chest rising and falling in a gentle rhythm. He looked so healthy. How was this even a possibility?

Two days later, on May 3, the second call came. It was after business hours, and I knew something was wrong as soon as I saw the number. It wasn’t the doctor’s office — it was her personal cell phone. Some part of me, maybe that invisible instinct that mothers have, just knew. This wasn’t going to be the reassurance I was clinging to.

I ran to Bradley, Bastian’s dad, and put the phone on speaker. The doctor told us that she received a call from the hospital, and after further testing, it was confirmed. Two gene mutations. Bastian had cystic fibrosis. She apologized profusely and said she hated to deliver this kind of news over the phone, but she didn’t want us sitting in fear and uncertainty a moment longer than necessary. Her compassion in that moment, when our world shifted beneath us, is something I’ll never forget.

I don’t remember much else of what she said — the rest seemed to fade into static. I broke. Bradley broke. The emotions hit like a wave we couldn’t swim against. We were drowning in them, no matter how hard we tried to keep our heads above the water.

I felt grief. Grief for the life I thought my son would have, for the freedom I never once considered he might lose, for every moment of struggle he’d now have to endure. I grieved not just for him, but for myself. For the version of motherhood I thought I was stepping into. I grieved for his dad, his siblings, his grandparents. I grieved for us all.

I felt guilt. I knew deep down this wasn’t something I caused. Even then, I couldn’t shake the voice whispering, did I somehow cause this? Was there something I could have done differently? I knew better, but knowing didn’t stop the shame from slipping in.

I felt anger. Quiet, seething, bone-deep anger. Why him? Why my baby? Why any baby, at that? He hadn’t even lived two full weeks yet. How was this fair?

I felt helpless. I was his mother; I was supposed to protect him. But I couldn’t protect him from this. I couldn’t make this stop, or go away. I couldn’t take it from him, even though I would have in a heartbeat. I would have endured it all if it meant he didn’t have to.

That night, I held Bastian to my chest and wept. I pressed my face into his hair and whispered apologies he’d never understand. As I watched him sleep, I allowed myself to feel it all — the grief, the guilt, the anger, the helplessness. 

But something else was blooming, even in the middle of all of the devastation: love. Fierce, immovable, unshakable love. The kind that promises, “whatever this is, we’ll face it, together.”

I didn’t know how to be a CF mom yet. I didn’t know what enzymes were, or that there were so many different inhaled medications. But I knew how to love him. And everything else? I would learn.

This is where our story began — not with medicine, or appointments, or machines. But with salt in our tears and hope in our hearts.

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