...In Sickness and in Health.
I have the best wife ever. Seriously. When we took our vows at the age of twenty she had no idea what we would walk through together. Yes, she did a research paper on Cystic Fibrosis and knew more about it than me on paper. But, experientially it was a whole different story.
Our wedding night was our first overnight trip together, our first time sleeping together and our beginning of life together. It was both exhilarating and terrifying. Mostly exhilarating for me and terrifying for her. Ha. She learned what Cystic Fibrosis really entailed quickly living with me. Thankfully she remembered her vows, especially the part of, “…in sickness and in health.” With CF it really is a both/and.
After the wedding and honeymoon, we started our new life together ten hours from home. We both transferred from UW-Eau Claire to Boyce College, a school of the Southern Baptist Seminary in Louisville, KY. She pursued a Bachelor of Science in Biblical Counseling and I pursued a Bachelor of Science in Youth and Family Ministry. We both worked and went to school full-time. We both served in our church’s youth ministry and made good friends.
Life was great, although we had a rocky start due to a number of factors: 1. Young 2. Selfish 3. Me. But, with the help of friends, mentors, and even marriage counseling we grew together. Love is a verb not a feeling.
I had a few health flare ups here and there, but over all by the grace of God, I was able to work as hard or harder than my most of peers. I was all in. I landed my first career job working full-time as a youth pastor. At this point I was doing everything right with my health. I was doing my airway clearance two times a day for 30 minutes each. I was doing my nebulizers and even exercising daily. I was super active working with youth and playing sports.
My wife got used to the regular rhythms and the limitations of living with my Cystic Fibrosis. She took on the role of our family budget (doing the books and paying the bills), the yearly insurance process, and making sure I had all my prescriptions and supplies. She made sure I ate a lot of food and helped me make wise decisions with my health. She took full ownership of my CF, sometimes sadly, more than me.
In 2007 we took in our first foster child. Soon after we took in another child. We opened our home and said yes to whatever children God would bring our way. In 2008 we adopted our daughter and in 2009 our son came into our home. Life could not get better. Children are such a blessing. We love them more than words can express.
I was a Youth and Family Pastor with an amazing wife, two beautiful children, surrounded by great friends. Of course, there are many hardships I could go into that make this journey beautiful, real, and life giving, yet I want to stay focused on how my wife has chosen to remain faithful to her wedding vows, “…in sickness and in health.”
My Cystic Fibrosis was on a slow decline through my twenties. In the moment, you could not tell I was progressing in my disease. It was a slow fade until 2012. This is the year I resigned from my church to move my family to a new city to plant a new church called Mercy Road.
Back in 2008 I had caught a super bug called MRSA. This was on top of a couple other super bugs I already had. I couldn’t kick it. With periodic antibiotics I was able to put it at bay, but every flare up due to a simple common cold would take precious permanent lung function. From 2012-2015 I was sick constantly due to the MRSA. I caught everything.
Church planting was the hardest thing I had ever done up to that point. I let my time get out of control. I was driven and didn’t take care of myself despite the cries and warnings of my wife. Soon, it was out of control. I went through infection after infection. I had a blood clot in my jugular. I had shingles and ring worm that would not go away and kept showing up. My family was constantly sick. It was not pretty.
I shared all this with my Dad. He shared it with a friend who then called me. As I told my Dad’s friend my circumstances and options to seek his advice He said, “If your house is on fire would you just rearrange the furniture, or would you get you and your family out of the house.” I said I would get my family out of the house.
We went all in. We decided to take on Cystic Fibrosis with everything we had. This meant moving to Arizona to seek out homeopathic options along with western medicine. It meant leaving winter behind. It meant focusing on my health, something I had not done in years.
I must stop at this point and show you how awesome my wife is to uproot all she knows and move across the country to start fresh. This meant everything new. She hates new. She hates change. But, she did it with the hope of a new healthier husband and father of her children.
She is strong and brave. This meant she had to get a job. She had to give up being a stay at home mom, her dream job. The job she was born to do. The job she loved and cherished. We had to go to a format many American’s follow with two working parents. This was a big adjustment for us and our children. I can testify, a stay at home parent is the best option, if it is an option.
We fell in love with Arizona and God provided every need, including great friends and a great church home. I was feeling better and better every day and applying for a full-time position at our church. However, during the interview process I had a health flare up. This time I learned I had a new super bug on top of the other ones I already had. This one acted fast. My lung function plummeted, and I removed my name from the interview process. Soon, I was on oxygen for activity which progressed to needing more and more each month.
I was already proactively meeting with a lung transplant doctor just to gather information and be ready if needed. Through this process we had a plan A and a plan B for transplant. Plan A was the Mayo Clinic in Scottsdale, AZ and Plan B was UW Madison Hospital and Clinics in Madison, WI. We had a plan.
As I was out with the family at a baseball game my Mayo Clinic doctor called me and said they were shutting down the program for a season. They were going to conduct an internal and external review due to two recent complications that led to death. In transplant world this is normal. The program was just getting started, but has great doctors and surgeons. Sadly, we didn’t have time to wait.
This left us with Plan B. What did this mean for us as a family? This meant moving back to WI, back to the cold, within a preferred two-hour radius of Madison. Remember how my wife doesn’t like change? So, after a year and a half we moved to back to WI. This time we moved to our hometown to live with my in-laws who graciously opened their home, heart and hands to help us.
When back in Wisconsin I went on 24-hour oxygen and was in and out of the UW hospital in Madison. Next, came the bi-pap machine, the home ventilator system, as needed and during sleep. My wife’s boss generously gifted us a new electronic bed so I could sleep with by back up otherwise I could not breathe. My mobility slowly left, and my wife and mother-in-law were bringing me meals to eat at my desk in my bedroom. My son and daughter made me coupons for unlimited meals they would serve me. They are so amazing. It was humbling.
I wrote my final letters to my children and my wife to read after my death. I made a video recording and prepared my family the best I could for their next season of life. I was one infection away from seeing Jesus face-to-face. We had peace. My wife continued to work, raise the children, and take care of me. Thankfully we had lots of help from her parents and my parents as needed.
At this point I want to guide you to my wife’s blog. She picks up from here and tells the story of our journey to new lungs. She describes in detail the events with real and raw emotion. It is a fascinating story. Check it out here.
On September 2nd, 2017 I received one of the greatest gifts of my life. The gift of lungs. I am forever grateful to my donor and his or her family. I thank God every day for them and their gift of lungs. Every time I have a hardship or get frustrated I take a deep breath. When you read my wife’s blog you will see it was the fight of my/our life. It still is a battle. But, with every trial comes a new opportunity. We are excited to see what this new opportunity brings us. We have enjoyed the ride so far. We thank God for the many blessing over the years.
Our marriage is stronger. Our family is getting closer. We are more focused. Yes, we will have more trials. We will have more change. We will have to be flexible and adapt. But, we know more than ever, nothing is impossible with God.
Jesus says, “In this world you will have trouble. But take heart; I have overcome the world.”
I have the best wife ever!
“He who find a wife finds a good thing and obtains favor from the Lord.” - Proverbs 18:22