It’s three weeks before the Kansas City Great Strides walk as I’m writing this, and I’ve decided my husband and I will take our twins to the walk this year. We haven’t been to one since before our kids were born in 2020, and honestly it hasn’t even crossed my mind until this year to take our kids to see what CF Foundation walks are all about.

But at 4-and-a-half years old, Alder and Winslow are inquisitive and curious, and they’ve been asking why and how about lots of things lately — including why mommy has to take pills in the morning and at night. I’m endlessly grateful that that’s all I have to do to manage my CF these days, but I realize there’s so much my kids will never know about my life with cystic fibrosis unless I am intentional about showing and telling them.

I became pregnant in February 2020, shortly after starting Trikafta in November 2019. Our twins were born in October 2020 via C-section. They are both only CF carriers, as my husband is not a carrier. And thankfully, they’ve only ever known me as a healthy person.

My family and I went to Great Strides after I was diagnosed at 7 years old in 1999. Growing up, I absolutely loved going to the walks. I remember them as balmy May morning — drawing on the pavement with sidewalk chalk as the adults dumped ice and plastic water bottles into kiddie pools to keep all of us walkers hydrated as we embarked on our three-mile walk.

CF walks were so much smaller when I was little; I felt like a guest of honor, being one of the attendees who had CF. Walks are one of the few CF Foundation events where more than one person with CF are allowed to attend. I remember walking around the park, looking at all the different team t-shirts feeling so seen — both by being represented on some of the t-shirts and seeing all the other CF kids represented on other teams’ shirts. We CF kids didn’t interact with each other much, if at all — eyeing each other from afar, curious to know more, but also aware that we weren’t really supposed to get close to each other for fear of cross-infection.

Walks are springtime celebrations made bright with balloons, giveaways and prizes, music, food, and games. And of course, the walk itself, which is more like a big parade of people walking and jogging, kids riding bikes and scooters, with “CF Fighter” signs along the way featuring those of us CFers who are in attendance. It’s fun and hopeful, and a perfect way to introduce my kids to the CF world.

Two days after the walk:

Since Saturday, our son keeps referring to the Great Strides walk as that ‘really fun thing,’ which tells you what he thought of the experience. I’m so glad we took the kids — they got goodies from the sponsor booths, rode their bikes during the walk, played with bubbles, and ate too many donuts (someone gave them a whole BOX of donuts! Whoever you are … I will find you! Kidding.)

It was a warm and sunny May morning, just like the walk days I remember from my childhood. There are similarities between now and then, but what really strikes me is how much bigger the whole production is. These days, Great Strides is a well-oiled machine.

But there are still hallmarks of what the day is all about, like the middle-aged man I saw crying and thanking his team for coming. I’m not sure if he lost a spouse, child, or friend to CF, but it was clear from his emotion that someone he loved had passed on.

A mother to a child with CF spoke at the kick-off, and her speech gave me chills. Those kinds of vulnerable, emotion-filled speeches always do. The strength, hope, and sadness all wrapped up into words are meant to inspire us and bring us together. And they do.

It was a special day that we won’t soon forget — getting to bring our kids, our ‘Trikafta Twins,’ to an event that mourns the lives lost to CF, honors the ones still fighting, and celebrates the advancements in research and care that gave me the health to have my children in the first place.

It was a day of gratitude for my husband and me. Who would have ever thought I’d be at a walk at 33 years old, healthy and with my children who are a direct result of what the day is about: adding tomorrows.

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