Cystic Fibrosis…The Road Not Chosen, but Privileged to Walk

Being born with a critical disease is a road that is not chosen. Jed was not diagnosed with Cystic Fibrosis until age 10. After many unanswered questions at doctor appointments an answer was finally given to his parents, they were told that a typical life expectancy at that time for their son would be his teen years. It was that day Jed’s dad gave him his life verse, Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Jed’s world and his families’ were forever changed. The process of daily respiratory therapy clearance, nebulized medications, and multiple pills every morning and night began. His life had become one of living with a terminal disease. His parents never let his CF hold him back, he still played sports and ran around like every other kid. Yet there were doctor appointments, hospital stays, and extra vigilance in keeping him healthy that had become a part of their lives.

As a teenager Jed started to rebel against the daily disciplines expected of him. He wanted to be “normal” and not the kid with the terminal disease. He sought out to prove that his CF was not going to hold him back and to make sure no one knew about his disease. It was at this point where I met him. What started out as a distant crush soon became a relationship. I found out through the rumor mill that Jed had some “sickness” called Cystic Fibrosis and that he was going to die young. I quickly started to research what CF was since I had never heard of it. I questioned if the information given to me was reliable, yet I knew that no matter what I was falling for this guy. I recall a friend approaching me in the school hallway one day and asked me how I could date Jed knowing that he was going to die. It was then at the age of 16 I realized how it was foolish to not love someone because of fear of losing them, rather than enjoy the time you get to love them. It took time for Jed to tell me about his cystic fibrosis and let me into that part of his life. It wasn’t until Jed was 19 that he truly started to live as someone with CF rather then someone trying to hide his CF. He finally embraced the life verse his dad had given him many years earlier. He did not have to fear what others thought of him or what the future would hold, for God was with him, upholding him with His righteous right hand.

Having the knowledge that your life on Earth could be shorter than most, Jed recognized the importance of each day and the urgency of the gospel. He was still not going to let his CF stop him, but rather let it motivate him. At the age of 20 he decided to go into full time ministry and two days before his 21st birthday he asked me to marry him. I chose to join Jed on the road of living with Cystic Fibrosis. “To have and to hold, in joy and in sorrow, in sickness and in health; as long as we both shall live” can be easily brushed over during vows, yet the depth of those words ring louder with the knowledge of a terminal disease. Through the years we learned, not always the easy way, how to balance ministry and health. In time, the desire to start our family came. We learned that having a biological child would not be the path for us. We grieved and cried out to God. At times it felt like God was silent, but He had an incredible plan we just didn't see.  We found ourselves entering the road of foster care and adoption. During our adoption process we had to have forms signed off by a Doctor stating that we were healthy enough to care for a child and that we could likely care for the child until they were 18. This question was haunting to Jed. His Doctor looked at us and stated “I’m not God, who am I to say when someone will die” and signed the papers. He knew that a terminal disease does not have to limit someone’s life, rather it can allow someone to appreciate life. 

Our children have never known life without Cystic Fibrosis, it is a part of our daily rhythm. Dad is the fun one to wrestle with, reads the bible to them, constantly cheers them on, and can always get them to laugh when he dances. At the same time he is also the one that has to take time daily to do his treatments and occasionally has to stay in the hospital so his lungs stay strong. This is the life they know, Cystic Fibrosis is not a scary thing but rather a fact of life. As the kids get older and life circumstances change to help Dad’s declining lungs their questions intensify. When will his IV come out so we can wrestle with him? Why do we have to move again? Why does Dad have to have Cystic Fibrosis? What if the transplant doesn’t work? What if he doesn’t get new lungs? At young ages they are having to learn what Isaiah 41:10 means for them as well. They understand that we live in a fallen sinful world that is not perfect, YET they do not have to fear, for God is with them.

In every step of the journey God has not left us, He has provided our needs and strengthen us. If living with Cystic Fibrosis can be done for His glory, then Jed sees it is a privileged road to travel. It is a road I am glad I chose to share with an amazing husband, father, and friend. Better to love, than not to have loved and lived. The battle is not over.