First published on ehospice.
When my daughter was diagnosed with a rare and life-limiting condition, my world changed in an instant. I was thrown into an unfamiliar place that I did not recognize—a world of uncertainty, fear, grief, and helplessness. As a father, I felt an overwhelming urge to fix it. That is what we do, right? We solve problems. We protect. We provide.
But what happens when the problem is your child’s illness—and it can’t be fixed?
I learned, painfully and gradually, that many fathers face this same moment. A child receives a devastating diagnosis, and suddenly everything you thought you were supposed to be—strong, stoic, solution-oriented—no longer fits. You are left standing in the middle of a storm with no map and no tools. Just love. And fear. And questions you cannot answer.
Pediatric palliative care helped me find my footing in that storm. No, it did not offer a cure. But it offered something else: a way forward. A way to be a father in the face of the unimaginable.
I was raised in a culture where men are expected to be fixers. When that instinct meets an illness that has no fix, it can shatter your sense of identity. I asked myself, “What did I miss?” “Did I do something wrong?” “Am I strong enough for my family?” These questions haunted me. And like so many fathers, I tried to hold it all in—to be “the rock” for everyone else. But that silence was not strength. It was suffering.
And that’s where palliative care came in.
Pediatric palliative care is not just for the end of life, it is whole-family support that starts at diagnosis. It is a team approach, with doctors, nurses, social workers, chaplains, and psychologists who are not just treating the child, walking alongside the entire family. They helped me make sense of what we were going through and gave me permission to feel what I was feeling.
They also helped me redefine what it meant to be a father during that time. I did not need to have the answers. I did not need to be strong in the traditional sense. I just needed to be there. Holding my daughter’s hand. Reading her a book. Sitting in the quiet moments. Advocating for her comfort. Loving her with everything I had.
That shift—from fixing to being—was the most profound transformation of my life.
Palliative care also helped ease the isolation I felt. As a father, I did not always have the same kind of built-in support network that my partner did. I did not know where to turn, or who would understand. But through counseling, peer support, and simply being invited into conversations I might have otherwise been left out of, I began to feel seen. Heard. Connected. Hearing another dad say, “I feel that way too,” changed everything.
My daughter passed away when she was four years old. That pain will never go away. But I will always be grateful for the support we received through palliative care. It did not remove the grief—but it gave me purpose. It helped me understand that love is not about fixing; it is about showing up every day, fully present.
Pediatric palliative care is not a cure—but it is a lifeline. For fathers especially, it provides a space to feel, to connect, and to redefine what strength looks like. We may not be able to fix everything—but sometimes, the most powerful thing we can do is simply be there. And in the end, that is more than enough.