I have two children: my son, Elijah, and my daughter, Elara, who has cystic fibrosis. Some afternoons, my son is excitedly telling me about his day at school. I hear every word he's saying. I ask questions. I laugh when he expects me to laugh. But another part of my brain is somewhere else.
Did that cough sound different? Is that runny nose just another daycare bug? Am I overthinking it, or am I catching something early? Should I message the care team?
That's the part of parenting a child with cystic fibrosis that people don't see.
The mental load isn't just everything I do. It's everything I carry in my head while I'm doing everything else.
People often talk about the physical demands of parenting a child with cystic fibrosis: the treatments, medications, clinic visits, and hospital stays. Those things are real, and they can be exhausting. But what I've come to realize is that some of the hardest parts of parenting a child with CF aren't the things anyone can see. It's the constant balancing act happening quietly in your mind.
While I'm navigating life with Elara's cystic fibrosis, I'm also raising Elijah, whose childhood is unfolding very differently. And those are two very different childhoods to hold at the same time.
With Elara, planning and vigilance have become second nature. I think about medication schedules, nutrition, appointments, insurance approvals, exposure risks, and whether a small change is simply part of being a toddler in daycare or the beginning of something more. Most parents think about their children's health. Parents of children with chronic illnesses often think about it all the time.
But alongside those thoughts are thoughts about Elijah. Is he getting enough of me? Does he feel seen? Am I showing up for him in the ways he needs? Does he understand why some days look different than others?
When one child has a chronic illness, it's easy for family life to revolve around the medical side of things. Doctors’ appointments fill the calendar. Treatments become part of the daily routine. Decisions often revolve around health. Meanwhile, the needs of the sibling without the diagnosis can become quieter — not less important, just easier to miss.
I've learned that parenting two children in these circumstances means carrying two different kinds of worry at the same time. One is medical. The other is emotional. One has clinic visits, cultures, and test results. The other requires paying attention to feelings that don't always have clear measurements.
The challenge isn't loving one child more than the other. Parents know love doesn't work that way. The challenge is making sure neither child feels defined by CF.
I don't want Elara's entire childhood to be about her diagnosis. And I don't want Elijah's childhood to be defined by his sister's diagnosis.
Both deserve their own stories. Both deserve the freedom to simply be kids.
There are days when one child simply needs more of me, whether medically or emotionally, and I find myself wondering if I'm getting it right. I think most parents know this feeling. We're constantly adjusting, recalibrating, and trying to meet everyone's needs — including our own.
What people don't always see is how much mental energy that requires. It's assessing the risk before saying yes to a birthday party while trying not to let fear make every decision. It's packing emergency supplies alongside snacks and sunscreen before a family outing. It's lying awake replaying symptoms, wondering if you should call the care team, while reminding yourself not to let those worries overshadow your other child.
The mental load isn't just managing CF. It's trying to protect two childhoods at the same time. One from infections, hospitalizations, and everything that comes with CF. The other from growing up feeling like life has always revolved around it.
Over time, I've learned that the goal isn't perfect balance. Perfect balance doesn't exist. There will always be seasons when one child needs more, and moments when circumstances dictate where my attention has to go.
Instead, the goal is connection. It's making sure both of my children know they are deeply loved, valued, and seen for who they are, not just for what our family is navigating. It's remembering that while CF is part of our family's story, it isn't the whole story.
Tomorrow, Elijah will head to school and excitedly tell me another story when I pick him up. Elara will go to daycare with her tiny backpack, unaware of the planning that quietly surrounds her every day. And I'll do what I always do. I'll carry the things they shouldn't have to.
Interested in sharing your story? The CF Community Blog wants to hear from you.
