Navigating grief as the parents of children with chronic illness

A voice memo appeared in a text from one of my hemophilia mom friends. We usually see each other at national meetings or on social media, but we don’t talk much outside of that. She’s one of the coolest women I know, so I always wonder why we don’t connect more often. I picked up my phone and listened to her message.

Her voice, usually strong and passionate, sounded shaky. She told me how heartbroken she was after hearing her son with hemophilia admit that his painful joints were only getting worse. He realized he couldn’t become the athlete he’d dreamed of being.

“Caz,” she said, “I know you understand.” My heart broke — not just for her son’s pain, but for the grief he must feel as his dream slips away. It’s not because he lacks talent, but because his body won’t let him reach the goal he cares about so much. I also felt for my friend, who carries the heavy grief of a mother who can’t help her child. All she can do is pray for his heart.

I know some of you might be thinking, “How is his dream over? He can still be involved in sports!” That’s true, but when a young person has a dream, they want it to happen just as they imagine. Changing that dream, even for good reasons, still feels like a loss. Loss brings disappointment, even if there’s still hope. Grief doesn’t go away just because there are other options.

Recommended Reading

October 22, 2025 Columns by Cazandra Campos-MacDonald

Respecting our physical limitations, even when they’re frustrating

Hemophilia can be managed, and with new treatments, many may never have a joint bleed. But joint damage is a reality, as my 20-year-old son, Caeleb, and my friend’s son know all too well. Their target joints have sustained lasting damage that results in chronic pain.

In such cases, the limitations are often significant — and not because of overprotective parenting. Instead, they’re the result of years of swollen joints, reduced mobility, and pain that persists long after a bleed resolves. And even when one bleed heals, another often starts, and the damage continues. The cycle just keeps going.

The value of presence

As my friend talked, I knew there was no easy answer to take away her pain. I couldn’t make the situation less heartbreaking. This was a moment to listen, not to try to fix things.

So that’s what I did. I sat with her in silence and let her grief be what it was — real, heavy, and valid. Sometimes the best way to help is just to be there for someone whose heart is breaking, offering your presence instead of a solution.

I think back to the hundreds of times I felt defeated as a mother, wanting nothing more than to take away my son’s pain and disappointment. I searched for ways to help him, hoping to ease his grief. I tried to find light in the bleakest moments, believing that offering hope was the right thing to do. But hope, when offered too quickly, can sometimes feel like dismissal. I didn’t realize then that while I was trying to protect my son’s heart, my own heart needed care, too.

When my friend left that memo, I heard strength in the waver of her voice. Strength means having the courage to be vulnerable. She wasn’t just sharing her son’s story; she was trusting me with her own heart. I need to trust others with my heart, as well.

In the bleeding disorders community, the strength of our shared experiences is what makes us unique. When we stay silent and carry our struggles alone, we can miss out on the deep connection that comes from being truly seen, heard, understood, and loved. The relief of hearing, I know. I’ve been there; it’s enough to comfort us and give us strength.

Reaching out to others is not a sign of weakness but of strength and courage.

There is no finish line when raising children — especially children with a chronic illness. Along the way, we encounter seasons, joys, losses, and transitions, each marked by moments of grace. Sometimes the most healing thing we can offer one another is presence.

May we keep listening when dreams change and pain persists. And when hearts break, let us help pick up the pieces. Because even during the hardest moments of the hemophilia journey, you are not alone.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.