My story is one which all CF Spouses dread. I am no longer a CF Spouse. I am a CF widow. While it is not a happy story, it is part of the CF Spouse life.
Sam and I attended the same seminary. The first time I had ever heard of CF was the first class we had together. In our introductions he stated he had Cystic Fibrosis. I had no idea what that was. A year later Sam asked me out on a date. We met for lunch and then talked for 8 hours. During that date, as well as the weeks to follow, I got a crash course in CF. I learned about his treatments, medications, life expectancy, lung function, diet and infertility.
We were together a month when we got engaged. The night before the ring was purchased Sam told me we would never grow old together and I had to be OK with that. We were married a month later.
During the first year and a half of our relationship we spent a total of 6 months of it in the hospital. He received a double-lung transplant on February 1, 2014, just over three months shy of our two year wedding anniversary.
The transplant gave us life. The selfless gift of a stranger meant that Sam and I could live, we could be a “normal” couple. We were able to have an amazing little girl named Aria thanks to in vitro fertilization. He was able to be a dad.
Our life changed when he developed pneumonia December 2016. I watched as he coded on December 30, 2016. The doctors were able to save his life, but life would never be the same. His lungs never recovered. He developed drop-foot and was never able to walk the same nor drive ever again.
By the end of the summer it was confirmed Sam would not be receiving a second transplant because the surgery was considered too high risk.
Sam was a fighter. He did everything in his power to be as healthy as possible. However, I remember a conversation we had, a few weeks after learning the second transplant was off the table. Sam told me he did not want to fight anymore. He was ready to be done. I remember crying and begging him to keep fighting, we had a Hail Mary pass we were trying and I did not want him to stop fighting, not yet. He agreed to keep fighting.
Looking back, I regret my part of the conversation. I begged and pleaded with him to continue fighting. I told him to just wait to see if the Hail Mary pass worked. Instead of begging him to fight, I should have talked with him about what not fighting would look like for him.
I was afraid. I was afraid of what life would look like without him. I was afraid of being a single mom to an almost two-year-old. I was afraid of what life would be like not being a care taker.
A few months later our Hail Mary pass failed. His body could no longer expel carbon dioxide. His doctor told him he had fought hard and if he was ready to switch to pain management that would be OK. Sam and I talked and he said that was what he wanted to do. He looked me in the eyes with a look pleading with me to agree with him. I did. I said it was OK. 24 hours later my Sam was gone.
A CF Spouse fights for their spouse. They are a cheerleader and advocate. Sometimes this means letting their fight be done.