For the Fighters, the Families, and One Very Special Little Boy

I'm biking because of a little boy who forever changed my heart.
 

As a nurse, I had the privilege of caring for a child with cystic fibrosis the most handsome, sweet, and carefree little soul. He never let his diagnosis define him. He taught me what it means to live with joy, even though hardship.

 

One day, in the middle of a crowd, he suddenly lifted his shirt, danced around, and shouted, “My button!” while joyfully reciting Pete the Cat. He was showing off his Mic-Key button (his feeding tube) something I assumed most children might want to hide. But to him, it wasn’t a source of shame. It was simply part of who he was, something that nourished him and helps him keep going. I remember thinking, I wish adults could be like this proud of every part of their journey, even the hard parts.

 

Despite belly aches, PFTs, treatments, and everything CF throws at a body, he lives with an unshakable spirit. I still think about the popcorn with extra butter, the laughter that fills the room, and how fully he embraces life every day. He doesn’t see himself as chronically ill, he is just a normal little boy who likes Ironman.

 

To this day, his light continues to guide my path in healthcare. He imprinted on me what it truly means to be present, to be brave, and to cherish the small things.

 

I ride for him.
I ride for every child and adult living with CF.
I ride for the families, the caregivers, and everyone still waiting for a cure.
Through all the tough days, the heartaches, the treatments love always prevails