Living with Cystic Fibrosis: Marriage

2010
Wedding Day – Chantilly, VA
As I spend the final days of Cystic Fibrosis Awareness month on the topics related to being an adult with CF – today we are talking marriage.

 

For most CFers’ lives they must constantly think of health first. It may not always shake down that way…. I know more than a few how have broken out of hospital stays to play with their high school sports team or who have chosen to delay a procedure for a trip or who have made the wrong call and landed in the ER. But in the main the priority of health is always there. Most of the time I agree – but the experience of marriage has been different. Let me explain.

 

It is our belief based on faith, tradition, and culture that choosing to marry is making the decision to share your life with someone totally and completely- through it all and until death do you part. We have been lucky because we share this belief and it is sustained by being blessed to be in love with each other. When we started this journey we knew CF would be a big piece of our life puzzle. But if I am being honest getting through some of the big items related to CF almost broke us. This life (really all of life) is very hard …. so having to share the management of it between two humans can be crazy. Plus we have required the support of family and medical personal – more than most in their 20s and 30s. We often weren’t trying to live our life and rather were just surviving it, with way more of a team than a couple (Please know we love our family and medical team but it can take a toll on a young couple who haven’t quite figured out their own life – and need to explain it so intimately to others).

 

The beauty of the almost broken was hitting rock bottom and having to build back up. Love was never the question – but it can’t fix everything either. And to be struggling during a transplant recovery with medical emergencies all the time, bills, no ability to plan a future ( do we want a family? Or as simple as can we go to the movies next Wednesday? No planning was possible and there was no break to our just surviving transplant life) makes it worse. So early on dealing with such serious illness that more often comes to marriages who have had years to mature, we got lost. What had to happen is a not an overly popular opinion in the world of illness …. but it is our truth: we had to put the marriage first- even above Danny’s health. Once we answered the question of choosing to be married, the path would be set.

 

Here is the deal choosing marriage first makes you a team. As a team you are choosing to tackle everything together and your on the same side. No longer trying to defend your roles of seriously ill patient and full time caregiver/provider. If your goal seeks to stay a team you work to understand the other person’s perspective, you want to provide a place of safety and comfort for your partner, and your determined to stay a team – suddenly health organically will be a priority or you will stop demanding understanding and start seeking to give it.  Your marriage will become a source of strength and comfort, instead of another thing in your CF world falling apart.

 

For us these lessons did not happen overnight and I can’t begin to tell you the importance of professional counselors who share your values and whom you both trust. If you are interested in a few more details as to how we navigated those waters of rebuild, and told with more animation (aka I talk with my hands) – check out my interview on Ashley’s YouTube channel on marriage. Most people look at having to try so hard, work so diligently, and owning the mess (so it can be cleaned) as failure. No one chooses that experience – but through it all we came out with a marriage stronger and more beautiful than we had ever imagined. We would pick this life over and over again …. so I would also pick the hard work to get there. Our scars and story make us proud.

 

And finally I want to end today’s topic of marriage with an acknowledgement: when Danny was born his life expectancy did not suggest adulthood was going to be part of his story. As he got older the chance to live to adulthood became very good – but would he get to experience all of life as an adult? Choosing to get married was a step in faith and hope – faith in his future, faith in me and faith that he could learn to share a life that is unique and more easily managed to the best of his own ability than our ability as a couple. Hope because he chooses to hope for a bright future, hope for a family, hope to make the love of his life love her own life. At 25 I am not sure many other husbands to be faced that question and I will forever be grateful he did and the answer was yes.

 

CF and marriage isn’t easy – but the beauty found in its mess and miracles has been the greatest blessing of my life.

 

Thank you so much for reading and remember to make it a great day!
Jackie

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