Cystic Fibrosis and Faith

It’s May, and that is a very significant month for the Cystic Fibrosis (CF) community because that means that we spread awareness of a disease that affects children and more and more adults as they age from childhood and help to find a cure. There are many ways that I have taken to incorporate my illness into my daily life in small yet meaningful ways. My most important to me is my “65 Roses Stole” that my mother made for me. The liturgical stole I wear over my robe (I am an ordained American Baptist Minister) has precisely 65 roses. 65 Roses is a theme and slogan for the Cystic Fibrosis community. You can read the story here. The story of my stole is not something I share widely, but it’s something that I know and makes that stole important to me and my ministry.

You see, everyone with CF has a different story and battle. Each one is unique as a snowflake but as similar as a snowflake too. I always share about CF and a portion of my day-to-day life during May, as it is CF Awareness month. I have most years unless I, too, find myself sick or hospitalized (which has often happened). I share my story not for sympathy or kudos but to bring awareness and an element of transparency to an otherwise invisible disease that affects so many different systems of a CF patient’s body.

As I have now reached the median age for a CF patient this year, I find myself humbled and thankful. I am in decent health for a CF person, but that hasn’t come without sacrifice, cost, & a heck of a lot of work. This work includes over 65 pills a day, daily treatments, a feeding tube regimen on top of a bowel regimen, and more doctor’s appointments a month than I can count anymore. But all of those things are irrelevant. Why? Because I owe my life to Jesus. I am thankful for my disease, as my Savior and my disease have taught me how to be a better person, how to live life, and how to love others. My disease has taught me acceptance, mercy, and grace. It has taught me not to take life for granted and to enjoy each day to the fullest, even in the most mundane aspects of life. Cystic Fibrosis has taught me how to be thankful and appreciative. Not everything in life is a death sentence, emergency, or depressive episode. I have learned (with Jesus’ help) how to wade through the waters of change, medical set-backs, surgeries, and very long hospital stays.

I have surrounded myself with cheerleaders: people who encourage me, uplift me, pray for me, run to my side to rescue me, help my husband, text me often, and keep in touch. Life is too short to surround yourself with people who won’t be on your team, cheering you on, praying for you, and lending encouragement. Some may say my boundaries are tight, but my boundaries are there for my mental health, healing, and filling my life with the joy that Christ desires to be there. I’m still learning to love as Jesus did. Half the battle is learning to find your purpose in the current situation. I’m blessed that I found mine at a young age and continue to practice those lessons.

God is good, all the time. I am blessed, every day. Every day I wake up with a fresh perspective, fresh eyes, and a new journey to go on with my Savior. How will you start your day today? You have a choice. Which one will you make?

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