“But he looks so good” is a phrase we hear a lot of in our life. Danny has a great smile, bright eyes and broad shoulders – when he is feeling good, he looks healthy. The problem is that good is not true and it is becoming more and more of an infrequent sight.
My husband walks around this earth with 28% lung function and for a while he has been able to make it work. Certainly not the same as when he was at 30% or 40% – but enough that our life can retain some sense of normalcy. We have come to realize the human body can learn to adjust and compensate for loss – it just needs time and a few new expectations for its abilities. It has amazed us to see Danny’s body just keep going, despite the challenges and in turn we continue to try and reconfigure our life to meet his ever changing needs. This is what it means to live with CF – in your body and in your home.
Right now we stand at a crossroads – new lungs or these lungs. The new lungs will provide deep breaths, a full life, and relief for CF not winning out. But as I have shared before, it also is going to introduce a whole new set of unknowns (potentially rejection), following a long surgical journey. Yet if we keep the old lungs, they will continue to lose space and function, even though we will know that we have used them for every ounce of their worth. The stop watch for the new set of lungs will hold off on starting the longer we hold out. We have every reason to believe the transplant will provide a completely new life to Danny and for many, many years – but the reality of that is not certain. The balancing act of each of these options is a constant seesaw occupying our minds. For each and every choice there is a reaction and result that will likely present you with a new crossroads. It is hard to not want to scream out its not fair or what’s the point. But the truth is – couldn’t we all do that? LIFE is a serious of decisions that lead to more decisions that lead to more decisions – and we are all just working on our balancing act along the tight rope of life.
In this moment in time, standing at this crossroads, the decision is not really ours to make. Sure, Danny could list – we have been told he is at a point where it would make sense to take that step, but we are reminded that even listing won’t guarantee a new set of lungs for a few months. That still does not mean we shouldn’t list and once we work through some of the latest updates from our visit in late September, we will be closer to making the choice. In the meantime, we are having to learn how to live in the here and now, exactly as Danny feels in each moment.
The desire to do our favorite fall things are bubbling to the surface and our frustration with trying to see friends, enjoy life, have a date is hard to ignore. But the truth is – no matter how Danny looks – he is working with 28% lung function and that means yesterday has nothing to do with today and tomorrow is completely unknown. Yesterday Danny went to his first hockey practice of the year and then watched the O’s game at his parents house. He came home close to midnight with a whole mess of energy! Excited for the year ahead with his players and all sorts of wound up over the loss of his beloved Orioles! A true mix of happy and angry that resulted in throwing on the lights to wake me up for a big kiss and running around the hallway with the dog who was thrilled to have his favorite wrestling buddy for the night! Yet today, Danny had to go to the ER for fluids. He pretty much slept the entire time there and since coming home has not moved much from his nest on the basement couch. We have been told every ounce of food, every inhale of air, and every morsel of energy Danny has is going to breathing, so each day is going to look completely different.
Although it feels as if this aspect of our life has been going on for years, our friends are very accustomed to the Bessettes missing things for a tune-up, or the ER postings from the middle of the night, I am coming to terms with this change of plans being a much larger part of our world. Committing to something in two hours may not even be possible and part of our job right now is learning to accept it. We are so grateful for those in our lives who are learning to embrace and understand this new phase with us too. I know it has to be hard when we say no to something one day and then you see us out and about the next. Believe me – it makes no sense. But that is life in the CF lane and for now I am proud of Danny and I learning to roll with it!
Thank you so much of reading and remember to make it great day!