Unfortunately, due to Jed’s digestive track reacting to the drugs he has received he now has more tubes in different locations. Currently he has 6 tubes going into his body besides his standard IVs. Often getting up and walking can bring relief though. Liquids and solid foods are still off limits until all the tubes are removed and his digestive track is functioning again on its own. This has certainly been a test of mental and physical strength for him during his discomfort.[...]

The road has started with complete awe to see Jed breathing again with ease. On the second day, he was fully off oxygen assistance, after needing it for over a year, and holding steady at room air. He said he couldn’t remember what it was like to easily breath in and out of his nose. For so long now his breathing had been labored and he had to breath out through his mouth. We even discussed how in the past due to Jed being winded I would answer the Doctors questions for him. I had gotten into the habit of finishing his stories and statements. He looked at me yesterday and thanked me for always helping, yet now he has the breath to talk for himself. Laughing I told him he may need to give me time to readjust to not taking over for him.[...]

7:45pm on September 1, exactly 7 months on the double lung transplant waiting list. 

We had just finished a Nagel family dinner with my siblings and their children. I was also in the middle of doing a “back to school” hair style on Kylie when Jed’s phone rang with a potential donor match. We did the usual routine of running around grabbing our bags, family helping with the kids and loading the van. We arrived at the Hospital around 10:30pm and got settled into his room, then the process of waiting started. We were informed that if the surgery happened it would be early the next morning around 7am. We got to sleep around 2am. At 5am, we were told we needed to get up, shower, and get Jed prepped and ready for when they might come for him. 7:30am and no one had come to take Jed or do the final medicine prep. At this point we were starting to feel like this might be another dry run. Then walks in the anesthesiologist with his team to check in, so we were asked to say our goodbyes. Jed’s father prayed over Jed and prayed for the surgeon and his staff, then by 7:54 they wheeled Jed out of the room. Holding my breath knowing that this is not certain until the incision is made. So, we wait to hear, praying that Jed will wake up this time with new lungs.[...]

July 12 at 3:02pm the call came again.  It was the hospital with a potential donor match for Jed.

This time we were better prepared, bags were mostly packed and ready to go, family was around to grab Kylie from summer camp, and my nerves were slightly better this time around so I was able to drive to the hospital. We arrived by 6:00pm and were able to get Jed settled in his room right away. Very little information is known at arrival, but shortly after settling in we were told by the staff surgery (if it happened) would be around midnight.[...]

It has been over 5 months since Jed was put on the double transplant waiting list. He has now spent over a full month at home out of the hospital. We are thankful for this time out of the hospital.[...]

Going into the hospital this last time Jed and I started to mentally prepare for him not walking back out unless he is able receives a transplant. So we are thoroughly enjoying that he was able to break free yesterday from the hospital and be home for whatever time frame we are given. After 2 weeks of antibiotics, respiratory treatments, and steroid boost he is back home to the “Haas Home Hospital”.[...]

A few years back Jed decided to select a word of the year that would challenge us as a family. Past years we have embraced words like Mission, Gospel, Kindness, and Courage. With the craziness of quickly moving back to WI we did not take the time to decide on our family’s word for 2017. I remember Jed saying in January that we didn’t have a word yet, I told him halfheartedly that our focus word for 2017 was to just survive.

There are definitely days where the word survive rings true. With the battle of balancing everyday life, insurance, work, school, and kid’s emotions, doctor’s appointments, hospital trips, health routines; survivor mood kicks in. Life easily can become a list of tasks to accomplish while struggling to determine which things are higher priority. I occasionally have to stop myself to remember time is valuable and ask the question, “How do I want to spend it?” The truth is we may not be able to control all of the circumstances around us, but we decide how we respond. Do we stop to see the blessings of the small moments? So, our family is learning to laugh at the awkwardness of sleeping with machine attachments, finding joy in the moments spent with our kids over Starbucks dates at home, daddy being able to watch CJ’s baseball game from the car, playing family games, and having intentional conversations about life and God.

There are still many days and nights that I find myself asking why. Why God are you not taking away his pain? Why are you not helping him to breathe easier? Why are you not giving him more strength? Why has the call not come? Attempting to comfort him in moments of pain, sometimes with tears rolling down my face covered by the shield of darkness at night, I realize the best and only thing I can do is pray. No matter how organized my task list might be my attempts at control in life cannot change the condition of his lungs. That power is left only to God. I want so desperately to take control yet the only control I have is my response. How will I love my husband in this season? How will I meet the needs of my family? How will I treasure these small moments of joy? How do I help our kids to see God’s love in the midst of uncertainty?

Today Jed ended up back in the hospital again. His lungs are tired at 13% and any flare up at this stage lands him back in with IVs and increased treatments. Our family received the gift of ten days at home together to spend with family and friends, we are choosing to be grateful for that time. Now as Jed and I sit in the hospital together again we can easily become discouraged, so, we must choose to find the joy in the moment. Date night has taken a shift to hanging out in a hospital room together and visiting with staff while the kids are with grandparents. But we are together and that I will cherish today.

As Jed says, the moment we stop living is the day we start dying. In order to survive and as Jed would say ‘thrive’ we have to learn to press forward and lean on God for the strength to laugh and enjoy each day. Now I get to go back to the hotel room, I mean, hospital room and spend some time with my guy. The nurse pointed out that he even invited me to stay overnight in his room with him this time. ;)[...]

After another 2 weeks in the hospital Jed is back home again! Sadly Jed has figured that in the last 90 days, half of those days were spent in the hospital, a reality that was not too thrilling for him. Nevertheless the days we get at home together are that much sweeter.[...]

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.[...]

My attempt to keep Jed in my bubble wrap has not gone as expected. Over Easter weekend Jed ended up back in the hospital. We have been informed that this constant in and out of the hospital is going to be our “new normal” at this point in the journey. There is still hope that his lungs would stay stable at a certain point, but with coming home his lung function has dropped again, they are now at 14%. He is able to use the CPAP/ BiPAP machine in the hospital which gives his lungs relief, unfortunately he’s CO2 levels don’t qualify him to have this machine at home through insurance.[...]