May is Cystic Fibrosis Awareness Month, and this year Maddox’s journey was honored in two very special ways. We completed our very first “Walk to End CF” as a family, and his preschool held a very special “CF Awareness Day” in his honor.

The Walk

Just participating in the walk this year felt like such a clear sign of growth for us. A year ago, just before Maddox turned one, I couldn’t even bring myself to sign up. I just wasn’t ready. Signing up made his diagnosis feel more real, more tangible. I didn’t want to see the faces of other kids or adults with CF — not because I didn’t care, but because I cared too much. I didn’t want to imagine what our future might hold. I couldn’t yet face the reality that we had a son whose name would be on a t-shirt, whose story would be shared, whose life we’d be raising money for. It was all too heavy.

This year was different. I felt excited. Of course I was emotional, but I was motivated to raise money for a cure for this disease that truly is real, is tangible. 

And wow, was it humbling. The crowd was small but mighty. We listened to stories from other fighters and their families—people who are much further down this road than we are. And while it made us deeply grateful for how healthy Maddox has been it also made us equally as sad for the battles so many people fight against this disease on so many levels. 

This year, we were so lucky to be joined by both of Maddox’s grandparents at the walk — something that meant everything to us. It was so special watching our parents walk alongside their grandson, cheering him on, walking with us. It reminded me that love stretches across generations and that this fight belongs to all of us.

I wanted to deeply thank everyone who donated to the walk. Your contributions to the Cystic Fibrosis Foundation are bigger than just Maddox. It’s for those living with CF who have had double lung transplants, who are hospitalized regularly, who live with rare mutations that don’t yet have treatments, and it’s for the individuals that aren’t walking with us anymore. 

We walk for them. We walk for easier breaths. We walk for more tomorrows.

(Next year, we’re considering joining the larger walk in Portland. If you’re interested, everyone is welcome to join in and be a part of Maddox’s Army!!)

CF Awareness Day

Later in the month, Maddox’s preschool held a “CF Awareness Day” in his honor. When his teacher initially reached out and asked “What can we do here to raise awareness for CF month this month?”, I broke down in tears. This question itself truly struck an emotional cord and reminded me just how surrounded Maddox is with support and love – from his family to his classmates.

On May 21, they hosted what’s known in the CF community as “65 Roses Day” — a child-friendly way to say “Cystic Fibrosis.” That morning, Adam dropped Maddox off and saw every single child wearing a purple t-shirt (purple is the CF awareness color) that said “Maddox’s Mates” on the back and “In our class, nobody fights alone” printed on the front. Adam told me he had to fight back tears. And then finally cried and cried on his drive to work after that drop off. 

The rest of the day at the preschool was filled with finger painting “65 roses” (pictured below, it was given to us and signed by each child as a card), eating applesauce (like Maddox does to take his enzymes), bubble blowing to “exercise their lungs like Maddox does every day”, and reading a book called Mallory’s 65 Roses – a children’s story that was given to me when I was pregnant. It beautifully explains what it’s like to live with CF in a way that little ones can understand.

Maddox’s teacher shared with me that one of the preschoolers, before going home that day, said “I’m going to tell my mom and dad about 65 roses. They should know that sometimes babies are born with it and they need extra hugs.” I couldn’t ask for more. It’s so important for kids to know sometimes their friends are born with different challenges they don’t face, and to be mindful and empathetic about those challenges. It’s equally important that Maddox knows his differences are seen and embraced, and that he, too, will learn to see and stand with others in their own, sometimes invisible, battles.

I am not often at a loss of words (as you all may notice from some of my lengthy blog posts), but this act of kindness truly took the wind and words right out of me that day and I don’t know I’ll ever be able to express just how much it means to me and our family. Someday we will get the complete joy of showing Maddox photos from this day and tell him the story. He will be reminded of just how loved and supported he is by his community, even as a tiny toddler.

He will know, undoubtedly, that he was never fighting alone.