On October 20, 1980, I was born into a very loving family. When I was 3 days old, I had surgery to fix a bowel obstruction (meconium ileus) and my parents found out their first born had something called cystic fibrosis. They didn’t know too much about cystic fibrosis but they knew it was serious. The doctors explained that cystic fibrosis is a genetic disease that causes abnormally thick and sticky mucus that clogs the lungs and obstructs the pancreas. Back then, there weren’t a lot of treatment options for CF patients. My parents were told to give me enzymes with anything I ate (as a baby, sprinkled in applesauce) to help me digest my food and they learned how to do daily manual chest physical therapy to help loosen any phlegm in my lungs. My parents were told that I probably wouldn’t live to see my adult years. I can’t even imagine how difficult and overwhelming this all must have been for my parents to hear.
Well, God made a perfect match when he chose Ted and Diane Cushing to be my parents. They heard the devastating news the doctors told them but they also believed God had a great plan for my life. They chose to trust in Him and not worry about the years ahead. And growing up, I never experienced a sense of worry from my parents. Concern, yes, but never worry or anxiety.
Our family life was very busy. My parents encouraged everything. Church, youth group, ballet, tap dancing, violin, trombone in marching band, piano, choir, tennis, friendships, vacations….we did it all. I’m thankful to my parents for sharing their zest for life with us (I have a younger sister. She is a cf carrier). They didn’t shelter me. And I thrived. I appreciate that we spent more time laughing and celebrating the little victories rather than dwelling on the hardships and disappointments.
I was a pretty healthy kid. Cystic fibrosis was just part of our life. I had quarterly doctors appointments and hospital stays. More CF treatment options became available as years passed-daily treatments and medicines to keep my lungs as clear as possible and help me digest my food. This was life. This was my norm and I didn’t know any different.
Sweet College Years
My college years were wonderful. I recommitted my life to Christ, made some amazing friends and met Jim Grumbine, the man of my dreams, whom I married in 2003.
Those years were wonderful and very challenging. I was living on my own for the first time. I was suddenly responsible for my health care. My parents weren’t around to remind me to do treatments all the time. Classes, choir, orchestra, treatments, part time jobs, exercise, friends…..It was tough finding the time to do it all. Unfortunately, my treatments were not the priority during my 4 years of college. I was hospitalized 2 times during those 4 years for a ‘tune up’. (For cystic fibrosis patients a tune up refers to a hospital stay where they receive heavy duty IV antibiotics to fight any infection that may be going on in their lungs. My tune ups usually last about 2 weeks.) I can say that I was faithful in exercising pretty much every day and that helped to keep my lungs fairly clear.
In 2006, I was in the hospital for a tune up and this time, my health didn’t seem to bounce back like it had in the past. My doctor showed us the previous 4 years of quarterly lung function tests. Four years of working full time and I had lost a significant amount of my lung function. Doing my treatments and getting the exercise I needed often took a back seat when I came home from work too tired to do much more for the day. Not being compliant had caught up with me. Jim and I decided that my health needed to become our priority. I now work part time for the family business and this gives me the time I need to be compliant with my treatment plan. We have seen an improvement in health stability since making this decision.
My Treatment Plan
Jim and I work as a team everyday to stay compliant with my treatment plan. In addition to inhaled medicines, a little device called the acapella, oral medications, and my diabetes management, I get 5 sets of chest physical therapy each day. Jim does manual chest physical therapy for 3 of those 5 sets. For the other 2 sets, I use a vest to vibrate my lungs for 30 minutes each set. Currently, it takes me about 4 hours each day to do all of my treatments. Six days a week, I also exercise for 1-2 hours. At this point in my life, this is the most effective treatment plan option for me. I take the responsibility of being a good steward of my body very seriously. Maintaining my health is a job 365 days a year. The choice I make each day to be compliant with my treatment plan allows me to invest in other things like a part time job, volunteering, relationships, church, and hobbies (I love playing tennis, hiking with my hubby and dog, laughing with family and friends, taking pictures of sunrises, singing on the praise team….). I’m thankful to have access to effective treatments and for an amazing husband who motivates me each day to give 100 percent.
Research and Drug Development
It’s an exciting time to be alive. Many new treatments and medicines have become available to CFers in the last 20 years that my parents never dreamed I would have access to. We continue to be involved in fundraising for the Cystic Fibrosis Foundation and I participate in clinical trials whenever I have the opportunity. I am so hopeful that a cure for this disease will be found in my lifetime.
God knows best
Sure, I’ve prayed for physical healing and both of us continue to pray for this. Most days I’m very tired of fighting this disease. I think about breathing. I’d rather spend treatment time doing other things. Cystic fibrosis is relentless. My health is always a consideration. I crave normalcy. But at the same time, we are so certain in our hearts that God doesn’t make mistakes. I know that I am fearfully and wonderfully made. I trust that God’s plan is perfect. He gives me remarkable strength and endurance each day. He’s given me an amazing life partner to experience life with. Going through the hardships together make us appreciate the joys so much. I believe God uses all things for good. And I can’t deny that I’ve seen Him use CF for good in my life.
I will continue to do everything I possibly can to be a good steward of the physical body God has given me and I will continue to thank and praise Him for always providing the resources and relationships I need to thrive and endure. I hope my determination and perseverance is an encouragement to those around me. Life is a blessing. Even on the toughest days, there are always joyful moments. God has given us some pretty amazing opportunities so far in this life and I’m excited to see what He has in store in the days ahead. This is the race marked out for me.