"A Symbol of Hope" by Elena Goodrow

When I was born, every person in the room immediately knew something was wrong. After several emergency surgeries and lots of tests, I got diagnosed with cystic fibrosis a couple weeks later.

My parents grieved the life they thought I would have. All the images they pictured of a healthy child were suddenly no longer their reality. They saw a future of hardship and hospital stays, if I had a future at all. My outcome looked pretty bleak, meanwhile my parents were just trying to understand what CF even is. They had never heard of it before. When the doctors initially mentioned the words “cystic fibrosis” my Mom only felt fear. The man that would end up being my CF doctor for the next 20 years then walked up to my Mom to have a conversation.

“Do not research this disease. There is a lot of inaccurate information out there, outdated information. Your daughter was born during a time of progress. There are new medicines to treat this illness that will give her a much better chance at a fulfilling life. Anything you read will not apply to Elena. If you have any questions, come to me.”

This moment gave my Mom a small, yet powerful, symbol of hope.

Spoiler alert… my doctor was right.

People with CF that had been born before me didn’t get access to important treatments like pulmozyme, tobramycin, or a vest until later in their life. I was able to start them from the moment I was born. This definitely changed my outlook, and that is exactly what my Mom needed to understand at that time.

Flash forward to several years later, my family met someone with CF named David. David was in his fifties at the time, making him the oldest person with CF that we knew (He is now 70!). He was a symbol of hope for my Mom. She ran races with him and watched him succeed through his coughing fits. For my Mom, David was living proof that I had that chance at a long life. That is all she ever wanted for me, a long life full of joy and (moderately) good health. David helped her see that it was possible.

My family recently met up with David for the first time in years. It was so lovely to see him again, from a distance of course. We talked about CF, life, happiness, our pets, and so much more. My family has found new symbols of hope now, but David will always be special because he helped us push through the darkness when we needed it most.

A symbol of hope can exist anywhere. It can be in a person, a quote, a song, or wherever else you can find one. It may stumble upon you or you may seek it out. It will change over time and continue to find you when you need it most.

Last year when I performed at Backyard Bash in South Dakota, I was able to be that symbol of hope for someone else. I still think about that moment and how happy I was to provide that feeling to someone who was struggling. A women approached me after I performed, and burst into tears as she hugged me. She told me she has a young child with CF and she was so amazed that I was able to use my voice and breath so strongly as I sang. She said how impactful it was to see a young adult with CF thriving. I embraced her and thanked her for the kind words, and promptly asked for photos of her little one. We shared brief conversation and went our separate ways.

I got to be a symbol of hope, just as David was for my family in the past. It’s important we don’t take these moments for granted, and trust that that beacon of light will lead us to a brighter future.