Life Isn’t Always Clear-Cut: Life brings us to crossroads more often than we’d like—moments where both paths hold promise and risk. For parents, those decisions multiply. And when you’re a CF parent, the stakes feel impossibly high.
Over the last couple of years, Kevin and I have faced many of these difficult decisions. The kind that leave you frozen, looping every pro and con, until doing nothing becomes its own choice. I’ve learned that inaction—while comforting at times—is still a decision. And for us, it wasn’t sustainable.
In the fall of 2022, Olivia’s health was heading in a scary direction. Her sinuses were constantly inflamed, she was missing school, and we were dangerously close to a hospital stay involving IV antibiotics and sinus surgery.
Her care team at Children’s Mercy suggested what felt like a Hail Mary: starting her on Trikafta, a new CF modulator that had shown life-changing results for many in the community. With insurance approval secured, we made the leap—hopeful, yet cautious.
And at first? It was incredible.
She coughed less. Her belly didn’t hurt as much. Her sleep improved. She was smiling more, laughing more. We allowed ourselves to breathe for a moment.
But then… her mental health began to spiral.
Within weeks, we started to notice a shift. Olivia became more aggressive, anxious, and withdrawn. Our kindergartener—who used to dance around the house—began talking about death and how she didn’t feel happy or safe. She was acting out at school and sent to the office repeatedly.
We worked with her team to reduce her dose, hoping it would strike a better balance. It didn’t. The behavioral changes persisted, and as parents, we felt torn between two impossible choices: her physical health or her emotional well-being.
After several painful weeks, we made the decision to take her off the medication.
Almost immediately, we saw the light return. Olivia began saying things like, “I don’t feel so mad anymore” or “I’m not scared like I was on that medicine.” It was a heartbreaking relief.
We later learned we weren’t alone. Many in the CF community were sharing similar stories. These helped validate our experience and reminded us that even miracle drugs are not one-size-fits-all:
Trikafta Caused My Anxiety and Depression to Return
'The Miserable Drug'
Two and a half months off Trikafta, the physical symptoms began to creep back in. The belly pain returned. The cough lingered longer. She was having more mucus build-up and discomfort. Her care team suggested a slow reintroduction at a lower dose—a “micro-dosing” strategy that had helped other children tolerate it better.
And so we stood at another crossroads.
Ultimately, we chose to try again. But this time with open eyes, tight boundaries, and more emotional support in place. We wanted to believe that both her body and mind could benefit from this treatment.
Even with careful titration, Trikafta wasn’t sustainable long-term. While we saw brief physical improvements, the emotional side effects resurfaced, and we had to step away again.
Thankfully, in 2025, we were offered a new option: Alyftrek, a next-generation modulator with a different formulation. We’ve started that journey with cautious optimism, praying it brings more balance for Olivia’s whole self—body and mind.
The hardest part of parenting a child with CF isn’t always the treatments—it’s the uncertainty. The pressure to get it right. The fear of regret.
But I’m learning to name that fear instead of letting it paralyze me. I remind myself that fear is not from God. And even when I don’t know the outcome, I know He is present in the process.
If you’re standing at a crossroads in your own life—whether medical, personal, or parenting-related—I encourage you to reflect on what’s keeping you from moving forward. Sometimes the bravest thing you can do is to choose, knowing you can always course correct.
We’ve made—and unmade—many decisions on this journey. Some worked. Some didn’t. But each one taught us how to lead with love, trust our instincts, and lean into the unknown with faith.
More than anything, I want Olivia to grow up knowing that fear doesn’t get the final say. That hard choices are still worth making. That courage doesn’t always feel brave—but shows up anyway.
And that even when the path is uncertain, she’s never walking it alone.