My life as a mom of a child with cystic fibrosis has always been full of surprises. Some have been wonderful — like my son’s PFTs being better than ever — and some have been not so great — like a sudden hospitalization in the middle of exams at school. My son’s journey with cystic fibrosis has been my journey too. For so many years, I've been at the center of his medical world. I've known every prescription, every symptom, every doctor's name and face. I've held his hand through all the tests, all the treatments, and all the sleepless nights. Then came Trikafta®.
The miraculous impact of Trikafta has been a turning point in his health that started when he was 15. It's like a breath of fresh air entered our lives — literally and figuratively. His health improved and so did my peace of mind. He was finally able to sleep through the night without coughing, gain weight, and just be a teenager.
Since he turned 18 and became more responsible for his CF care, my emotions have surprised me. I feel proud seeing his independence, relieved by the shared responsibility of his care, yet also guilty. Guilty for the moments of relief I’ve felt, stepping back from the primary role of managing his medical needs. I even feel a bit ashamed for welcoming the reduced responsibility.
In the community of moms of kids with special health needs, there's a shared understanding that our children's needs are our top priority. Our roles are not just duties but identities. There’s a belief that tells me my son's well-being should be my singular focus. And for the longest time, it was. Over the years, our roles were clear: I was the caregiver, the organizer, the advocate, while my son focused on living life and managing CF the best he could. And through it all, I tightly held on to control, being afraid of what could happen if I ever loosened my grip. I realized I had a story in my head that said he wouldn’t be able to manage his CF care without me, that he was too laid-back or simply not ready.
But here's the thing — that was my fear speaking, not reality. Just because it's a worry I have, doesn't make it true. And I have to remind myself of that every day, especially when I imagine him taking on these responsibilities without me right beside him. And as an adult with a chronic illness, he does need to manage his health, and he’s navigating and learning how to be his own advocate.
Trikafta's role in this new chapter cannot be understated. It's given us more than improved health — it's given us time, freedom, and a valuable ally in my son’s journey.
Our roles are evolving, exactly like they should, and for that I’m so grateful. I know that this shift is less about me stepping back but more about him stepping forward. Of course, I’m still anxious during this transition, but I’m also hopeful.
All these feelings make me realize just how close we've been on this journey together. It's honestly tough figuring out our new roles as my son has become an adult. But life has a way of surprising us — of teaching us beautiful lessons when we least expect them. This transition hasn't just been about him learning to manage; it's been about me learning to trust. I'm coming to understand that trust, faith, and love don't always mean maintaining a tight grip. Sometimes, love means loosening our hold, taking a step back, and allowing our kids to surprise us with their incredible resilience and strength. And we don't have to feel guilty about embracing this shift. It’s more than just OK, it’s a reflection of our deep bond and the growth we're sharing together.
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