Cystic Fibrosis as defined by the Cystic Fibrosis Foundation (CFF) is “a life-threatening, degenerate disease that causes persistent lung infections and progressively limits the ability to breathe.” At birth Danny was diagnosed with CF, and has spent his last 30 plus years balancing between living his own life and living the life of a CF patient. When just a little guy,he had a bumpy start with many hospitalizations, surgeries, and a variety of different complications. But as he grew older, Danny did became stronger and had what he would describe as a normal childhood. He played a ton of sports, had a lot of friends, and enjoyed the many milestones life has to offer.
Over the past decade while navigating the waters of adulthood – jobs, marriage, building a future – Danny also had to learn how to take CF with him. For years daily treatments, his pill regiment, and regular hospital “tune-ups” would keep him healthy and strong. These days, with the progression of the disease, CF has become complicated and Danny now faces the balance between continuing the fight and a lung transplant. What was once just a factor in Danny’s world – has become a driving force in his ability to enjoy life. With a life expectancy of just 37.5 – still being here and somewhat healthy means Danny is one of the lucky patients with the opportunity to keep going, and the most incredible strength and will to continue to fight. Danny is an incredibly stubborn and determined person – and everyone is certain that he will continue to sail past life expectancies and be a symbol of hope for others like him.
Danny and I have been together since the summer of 2005 and managing CF has been a part of our story. My knowing about Cystic Fibrosis for many years – the realities of the disease were never something we had to discuss. However, learning to be a partner in the fight has been a continuous learning process. That first summer I just added a pill bag to my purse – and remembered feeling like it was a stepping stone of commitment in the relationship. Well that was just the beginning and I am proud to say I have gone from a somewhat squeamish hospital visitor, to considering myself somewhat of an ER and hospital pro! With only a million other lessons to learn, the growth process will always continue, but I am confident in my pretty strong foundation and the ability to hang in there on any medical CF discussion with the best of them!
The part of the CF story that is so hard to describe is the reality that we have spent many years trying to not make CF who we are – while at the same time our experiences due to CF has shaped us. We have been blessed to travel and speak on behalf of the CF foundation – experiencing some of the most incredible parties and galas that we would never have normally attend. When meeting parents and kids with this disease, we have seen there is no more incredible gift you can offer to another human being than hope and those are moments we cherish. The truth is with some of the most difficult, scary, and terrifying moments of my life as a result of this disease, still in the darkness of these times – we both have experienced a love and partnership that I feel unworthy of. There are no words to describe what we have seen, felt, experienced – I will just say that in my world, there has been nothing more powerful than realizing you would rather be at a person’s hosptial bedside on any given day than any other place on the planet. While the life of CF has challenged us, pained us, and provides the worse kind of unknown….. it also has molded us, defined us, and shown us the true love we have for each other.
Our blog will not be about CF. Certainly it will play a role in the story we tell – just like it plays a role in our lives. And in some seasons of life it is a larger part of our focus than others, which I will venture to guess will also be true on our little corner of the internet. So for those entries – we hope to help someone who also may be walking the life of serious illness or even CF. But as we share our journey, there is one thing we would always want to convey – everyone’s story is different, especially those with CF. We are always happy to give advice, share experiences, and provide insight – but please know you are the author to your own life – so we encourage everyone to find what works best for them and if we can support you in that effort, please don’t hesitate to reach out.
Over the years we have had the opportunity to help tell the story of CF with the Cystic Fibrosis Foundation. Check out some of those videos here:
We would be engaged shortly after this taping and the start to my dreams would come true