Last June Danny was crazy healthy. Lung function over 100%, working out all the time, so much energy- a whole new world. I was also discovering a lot of new: realizing that my life’s focus has been care giving and that everything else had been in auto pilot or path of least resistance, but now I could refocus. We found our world slowing down and our circumstances very different: healthy, two careers, and the gift of time that was once tied up in medical life. That was when our hyper focus on creating a new world got started.
We both became obsessed with stories, books, podcasts, YouTube montages-ANYTHING that reminded us that we could build the life we wanted. We could push our health to the next level. We could start to save for our future and some fun, instead of medical bills. We could make plans for our careers, growing our family, and the dreams we pined for (coaching hockey at a new level, learning photography and enhancing the blog, publicly speaking on our story, etc…). Not only had transplant given us a whole new world- having survived the emotional and mental trauma of the experience – it also gave us the knowledge that we could push ourselves to the limit and even if it was hard we would survive it. We had realized that the sacrifice, the struggle, even the pain of whatever we chose to do would leave us stronger, happier, and a closer couple. We signed up for a new type of fear and went for it.
From that time forward we both made pretty massive changes to our health, our exercise routine, our daily schedules, our careers, our bank account, our plans for having kiddos – we poured in, risked and had a lot of struggle – but also a lot of wins. And we suddenly realized that we had this sense of strength as both individuals and a couple that trumped the fears and made the power possibility real.
Then in the fall Danny’s lung function started to decline and we spent several months trying to figure out what could be the issue. After multiple hospital stays, tests – the works – it was determined that he was likely aspirating (food and/or stomach juices were getting into the lungs) and we opted for him to have a surgery where his esophagus was wrapped to basically cut off the aspiration. That surgery was in February and for the past few months we have been trying to help Danny get used to a restricted esophagus and give his body time to adjust to this new update – hopefully returning the lungs to fully functioning. Unfortunately the lungs did not return to functioning and the wrap has made Dan’s ability to eat very much a challenge. Since that surgery we have tried a few widenings of the esphagus, hospitalizations, and other rounds of exploratory options to determine if there was another reason the lungs aren’t opening up and working (infection or rejection) and to try and help Danny get nutrients. All in all it hasn’t done much. Dan’s lungs bounce between 35-42% function regularly, but they don’t see anything wrong like infection or rejection. Dan’s ability to eat and get nutrients is very compromised and he is weighing in closer to 110 then he is to 120. There is a theory that aspiration is still going on, but we aren’t really sure. There is not a clear answer for any of it at the present time.
Right now we are focused on the immediate need: getting Danny as much help as possible to stabilize. We are looking at a feeding tube, putting in a port so he can have some IV therapies, and adjusting things we can do at home: nutrition, light exercise, and a lot of resting. There have been a few moments of panic, wondering if this is ever going to get better – but we try not to stay there. To be honest – when one of our family members got really upset recently at seeing Dan look so sick – he said it this blunt “I am not dying today, and even if I was being upset changes nothing – so we aren’t going to do that”. That is our goal: not to worry, live life as best we can with what we have got, and surround our world with the necessary tools to keep that focus.
During this period of time we have had a choice: continue to move the goals we have been working on forward or pause and focus on health. There is no right or wrong answer. What kept coming up was the reality of what it had taken since last spring to see some of the fruits of our labors of change, so stopping it now would feel like a loss. Yet, to keep it all going we would need to sacrifice and carefully prioritize our energy, time and mental space. This has resulted in 100% focus on keeping the momentum by taking every opportunity to work or rest, so we have the ability to balance the return of medical life and this new world we are creating. The other night I got sorta down about it – we both did. We have hardly spent any time with friends or family in months and our little dates are pretty much hanging at home, drives in the country until someone gets too nauseous (since I have been on meds for a bit we were both green with ick – and one time even Quinlan tossed his cookies to not feel too left out) or on really good days a lunch date. But mostly it is working on something, planning to work on something or resting. And then it hit me, while listening to one of my pump me up podcasts (Rachel Hollis Rise interview with Robin Arzon – its amazing) we are still living in the state we had selected last spring. A state of sacrifice and focus, a feeling of discomfort now to get to the good stuff later, and learning what we are made of. It’s just not in terms of running a marathon or joining the police force anymore. Instead it is about survival and trying to make the most with what we have got – but isn’t that the same thing? Just because it is not the circumstances we wanted or expected – the result will be the same.
There are certainly hard moments and it would be untruthful to say we haven’t gone to worse case scenario. But it is also honest to say, we have really found a way to accept this season. Its not what we wanted, its not always fun – but we do feel growth, strength and by choosing this idea of pushing ourselves and choosing to learn through the tough stuff, we aren’t nearly as discouraged or frustrated as we have been in other medical moments. Which is actually pretty crazy because we have had more stress and busy and just plain hard with merging both lives: well with sick. And yet isn’t that funny? There is the lesson: the hard, the pain, the worst case scenarios we worry about happening, can still offer the moments of growth, the feelings of courage, and the experience of triumph our human spirits crave.
So that is where we are at friends. We are grateful for the understanding, appreciative of the good vibes and prayers and are happy to share that we aren’t hiding away because we don’t want to see folks – we are just slogging through it. And we hope this post isn’t just an update on life – but also some encouragement. It takes a lot of mental work and a steady diet of the right stuff (faith, motivation, some kick ass coaching) – but even the things you don’t want entering your world, can bring you the experiences you do want …. just gotta keep that mindset right.
Thank you so much for reading and remember to make it a great day!