My friend and colleague Darren Ryan with Onwards.org recently said to me “consider sharing from the wisdom, not the wound”, and it really impacted me. People ask me how I keep going, how I stay connected to the CF community, how I can still do this work after losing my daughter. Honestly, there were years when I did not know how either. I was just putting one foot in front of the other and hoping I was doing it right.

For anyone who does not know our story, I am Melissa and I am Claire’s mom. Claire lived with cystic fibrosis from the moment she was born. She spent more time in hospitals than anyone should have to, and yet she approached life with humor, curiosity, and so much heart. When she was 13 she started Claire’s Place Foundation because she wanted to help other families going through the same emergencies and long hospital stays we knew so well. She passed away in 2018 from complications related to a lung transplant. That loss changed me forever.

Becoming a CF mom in 1997 threw me into a new world - a world of treatments, medications, late nights, early mornings, and constant worry. It also gave me a community of people who understood that mix of fear and love that becomes part of your daily life. There were so many heavy moments, but there were also moments of joy that felt brighter because of everything we were up against.

And then there was Claire… she had a way of making things better even in the worst situations. Some of my favorite memories were not in the hospital at all. They were in the car on the way home from appointments or on road trips, blasting show tunes and singing way too loud, when she would stare out the window and suddenly say something unbelievably wise, like, “People think happiness is about the big stuff, but it is really the tiny moments like this that make you feel joyous, alive and connected to what matters. most.” She taught me so much in those in-between moments.

When she died, my world stopped. Grief is strange. It does not go away. It changes shape. Some days it whispers and some days it shouts. In those early months and even years, I could only speak from the wound. Everything hurt. Everything felt raw. And I guess that’s understandable, that was part of my process.

Little by little, something softened. I realized I could not lead from grief alone. If I did, I would sink. And the mission Claire cared so much about would sink with me. Talking from the wisdom does not mean pretending I am healed or strong every day. I am not. It simply means letting love, clarity, and experience guide me more often than the hurt.

Click to find our custom Claire Quote stickers for a bit of inspiration in your day

Continuing Claire’s Place Foundation after her death has been both the hardest and the most meaningful work of my life. I show up because this community matters. I show up because families out there are scared and exhausted and doing their best every single day, just as I did. I show up because adults with CF are building lives they never thought possible, and I get to cheer them on. And I show up because Claire asked me to, not only with her words, but with the way she lived her life.

Healing hasn’t meant forgetting. It hasn’t meant “moving on.” It has meant allowing the wisdom, the perspective, the compassion — to guide me instead of the pain. Some days I get it right. Some days I don’t. But every day, I try.

If you’re a bereaved parent reading this, or anyone living through something heavy, I want you to know this: there is a strength in you that you may not even see yet. You don’t have to be perfect to keep going. You don’t have to be healed to be helpful. You just have to keep choosing the path that honors both where you’ve been and where you want to go.

So that’s why I’m sharing this now during this season of gratitude. Because I’m grateful for this community. Because I’m still learning. Because I believe that when we share our stories, we create space for connection, for healing, and for hope.

Thank you for being here and for caring about this community that means so much to me.

With love,
Melissa

Sharing From the Wisdom, Not the Wound

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