Have A Little Faith in We

As I continue to get back to documenting our life prior to our little pause ….following our UVA trip  we attended the 2016 Cystic Fibrosis Foundation Breath of Life Gala. Each year the foundation hosts events all over the country to raise funds and awareness for CF.  Over the years both Danny and I have had the privilege of sharing our story at a variety of different CFF foundation events and as a result this community has become like family.

Some of the events we attend as guests, sometimes as volunteers, every once in while even as presenters….. but tonight’s event was extra special because the 2016 Breath of Life Gala was to honor the foundations fearless leader for many years, Dr. Robert Beall. And for this celebration Danny was asked to be one of the folks who said a few words.  Dr. Beall and his team work for the foundation  -but these folks don’t just give their time while in the office, they are working tirelessly to help the families facing this disease all hours of the day. Weekends, late nights – its not just business conference calls – it is after hour coffee dates with patients and their families, its weddings, its funerals….. these people are fixtures in our lives and we know it is because Bob was leading the charge. During the presentation they joked that he had two jobs really – the 9 to 5 and then the 5 to 9. He made it his mission to get to know these CF families and to really support them. Not just in the research, not just through fundraising – but by being in their lives.

Everyone had countless stories of how Bob would follow their journeys and seem to always pop up at the right time. For us Bob was our friend. He always knew what we were up to, kept up with Danny’s health, and one of the most excited folks to learn that we were getting married. In fact he called me before our wedding day to say how proud he was of my decision and outlook on life with someone who is sick…. but also to remind me of the incredible strength and ability to act not just with love, but  with tough love will be needed. CF patients are as stubborn as they come and the lives they face are hard – it will take everything I have some days to stand with Danny. He knew I could do it, but he also wanted to really remind me of my true duty when I agree to in sickness and in health. For Danny a lot of his Bob experience was wrapped up in how he picked a center for his transplant. Bob was very honest about what he thought was best for Danny and the sorts of decisions that would result in saving his life. These are hard conversations folks. Honest words like that can only be spoken out of love, because they are hard to say. But just like any good parent finds, his honesty and guidance resulted in great admiration, respect, and love from Danny and I. Bob has walked this life with us and as Danny toasted him this night he said that Bob has seen him through a lot of growing up, then getting married and now the next phase: a transplant. So one of his dreams is to introduce Bob to kids of his own someday. Bob may be heading into retirement, but he still has quite a lot of people hoping he will keep that 5 to 9 job going.

The Breath of Life Gala is the most distinguished of all the CF events. It is the sort of fancy event that Danny and I would not normally attend, making the experience really exciting. We donned our best apparel and soaked up the beauty of an evening out under the starry night sky of DC. This year the dinner was hosted by a variety of different chefs who were assigned a table to not only cook their best cuisine for, but to also actually describe the process to the seated guests. Our chef was so incredibly generous and great at this role. He has participated in this event for several years and even provided gift cards to each of us at the table to come dine in his restaurant.

After the presentation we all enjoyed a tasty dessert display from several different DC bakeries and collected a beautiful goody bag complete with wine glasses! The night was really lovely and we were greateful to attend.

My mother in law was the sponsor for the wine glasses and our table. It was so very kind of her to also include my parents on such a memorable evening.

In addition to the beautiful setting, touching stories, and special memories there were three experiences from that night that really struck me.

The first being that we were only a short while away from Thanksgiving and then subsequently Danny listing for a double lung transplant. For the first time the question “how are you feeling?” had a very different answer. So many of these folks who work with the CF Foundation or are CF families and have known Danny for a long time. They were fully of aware of his health struggles, his age, and the truth of what someone in their 30s with Cystic Fibrosis has to face. Danny has spoken at many events, been featured in different medias, and most notably was the child on the cover of Science magazine when they discovered the CF gene. Due to these opportunities it is common for Danny to do a sort of “where is he now” follow-up so it has been easy to follow his life’s milestones when part of this community. As we caught up with folks, we were not only updating them of Danny’s current status, but also getting used to the idea of our new position: preparing for transplant.

When Dan said it the first few times I felt relief. He is able to actually say it, we are able to actually explain our decision confidently, and clearly this meant we were getting used to the idea. Once I got past this feeling of calm from assessing how we handled this change, I was overwhelmed with a new realization… I looked at those hearing the news. The reaction from people we updated were all exactly the same: a moment of shocked pause that quickly gave way to a look of sadness. Their eyes suddenly got this heaviness to them as their faces contoured into a look of exhausted defeat. This reaction would seem long, but really was just a moment before they shook themselves awake and recovered with big warm smiles saying “that is great news” – but it was too late, we knew what they were thinking. This reaction took me some time to understand, but ultimately I came to be very grateful for it. All along Danny seemed to have a sense of defeat when reacting to the decision to list, as if it was a punishment versus his path into the future. Both Danny and the CF community have spent their lives to keep CF from taking over the lungs – but with this news Cf had won and the lungs were done.

As much as this was not a necessary pleasant part of the night and I began to worry it would affect the confidence Danny was searching for to list, but instead I was really grateful. All this time I felt confused why Danny felt such defeat. Not fear of listing…. not anger at his disease… not confusion towards the unjust realities of life – rather it was as if he had lost a game he was coaching or messed up a video game….. so that night I realized when you spend your life fighting to over come a disease (or being a family member helping the fight) when you have to move toe transplant it is not a graduation to the next step, its a plea for help through a last ditch effort. I would never look at listing or truly the remainder of this transplant journey the same.

Next item that struck a chord with me was a fact they shared during the presentation: there are more CF adults in the world than children. Cystic Fibrosis is a childhood disease and yet there are more adults? That is a huge accomplishment. The CF Foundation is first and foremost looking for a cure, but to be able to say they have altered the actual way this illness is defined means tremendous progress has been made. The search for the cure is certainly not going anywhere, but it is important to know the CFF  is also committed to the actual living of life for these patients.

Finally, looking back, on this event, I stand in awe of God’s timing yet again. Here were are thinking this is a big outing because it is prior to us listing. It felt symbolic that Danny could note the start of this new chapter by looking back at his growth and progress that always comes ups when we are with the Foundation. It helped me to better understand how Danny views his health through the interactions with him and other CF families. We received ringing endorsements of Hopkins and collected success  stories of others in Danny’s shoes. But as it turns out this event would actually mark the beginnings of our transplant journey. We had a chance to reflect on the importance the CF community brings by having others that understand and truly care about us making the best next set of decisions. We realized the truth that we were certainly telling a new story now. And we were made more fully aware of how sharing our navigation of this phase is appreciated by those who will come after Danny. This night opened up my heart a lot …. which was good because new lungs were right around the corner.

Thanks so much for reading and remember to make it a great day!

Jackie