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Finding Connections. Fighting Together

My older brother Ray was also born with CF. He was the only person I knew with CF for most of my life. You could say he was my CF role model since Ray was five years older. He got a picc line before me, was hospitalized before me and gave me a heads up on the nasty glucose intolerance tests that were coming my way.

Hey Parents, It’s Okay to Not Be Okay

“I like your headband,” my daughter says out of the blue, bike helmet in hand. “And your purple pants. You look like Superwoman!”

“I feel like Superwoman today,” I smile. “I’m strong, and I can do hard things.”

My daughter nods and zooms down the driveway. A year ago, she would have walked her bike down the small slope with caution. Now she’s learning to ride with no hands.

CF Mom in Charge. Rest Easy.

It was an afternoon in the middle of September in the state of Kansas, in the city of Andover, on North Maize Road. I should have been aware of the spunk and tenacity that would encompass the ladies with whom I was about to have lunch with. My mother, a Cystic Fibrosis mom, was also born and raised in Kansas.

STROLO Star: Kyle O'Tain

This past spring the CFLF launched the STROLO Star program, where we spotlight bright stars in our CFLF community. This program aims to share more stories from members of our CFLF community, including Recreation Grant recipients, volunteers, CFLF board members, CFLF Blog writers, STROLO-U instructors, sponsors, and more.

Pace It Like A Swim Practice!

Something I am still in the process of learning is that Cystic Fibrosis does not define me. I was diagnosed with CF at birth, and it is a big part of who I am. It has shaped the way I live and the way I see the world. CF is a big part of me...but it isn’t ALL of me.

A Day in the Life of CF: Episode 1 by Vicki Thompson (Re-share from 2015)

From Erin: This week we decided to publish one of our favorite articles from the CFLF blog archive. We've been thinking a lot about our good friend, and former blog contributor, Vicki Thompson, who wrote the following piece in 2015. It's been three years since she passed away (from complications of CF) but her energy and joy is felt throughout all of her writing. This one especially as we read AND get to watch a day in her life and remember her radiance, determination, and strength that we all admired and continue to be inspired by.

 

A Warrior and His Protector

Life begins with uncertainty. Who will you become? What will you become? Why will you become it?

You need a champion. You need an advocate. You need a protector.

One evening at an eatery in North Rock, Kansas, I found these traits in Cystic Fibrosis Warrior mother, Terri Mathieu-Erker, and her nearly two-year-old CF Warrior, Andrew, sitting at double tables, just to the right of the entrance.

Keeping Your Chin Up

Keeping Your Chin Up

I always found the expression “Keep your chin up!” to be a simple encouragement in times of difficulty, but recently I have realized that the position of my chin makes all the difference in my physical and mental well-being. Recently swimming again, I noticed that looking straight down in cloudy waters was a coping mechanism for maintaining my orientation and direction while blocking out the scary and unknown surroundings. But keeping my chin down also presented its own threats.

Our Pets getting us Through Quarantine

During the quarantine I found myself heavily relying on the companionship of my dog "Peanut Butter" AKA "Peanut." Having Cystic Fibrosis during this pandemic has been one of the scariest times of my life. The uncertainty of possibly catching COVID-19 weighed heavily on me everyday. When things first started getting crazy, I was still working as a delivery person. I would keep safe by wearing my mask, gloves, and not having any contact during deliveries, but here was still that little fear of getting sick. I eventually stopped working because it was not worth the risk.

The Warrior Across From Me

No one recognizes and understands the risk of undergoing a procedure that could save your life more than someone who has been living with a condition that could, and will, take your life.

The IHOP on Veterans Boulevard provided a nice setting and a comfortable place to decompress. In the middle of the eatery famous for its chicken and syrup. In the middle of the country.

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