Over the course of the next week we have appointments at Danny’s two potential transplant centers. Coming off of his extended hospital stay we are not as thrilled with the results as we had hoped. Normally after such a strong round of IV meds, Danny is on the top of his game. Back to normal and then some, but unfortunately this time he is still feeling a huge loss in energy, constant pain, and strained breathing.The reality hits that we have done most of the “for sure” things that typically produce a positive result – and instead he feels potentially worse.
Getting Danny home we had hoped he would feel better just by being outside the hospital walls. A change of scenery, his beloved pup, and back with me. The good life we had been enjoying would not be the same right away – but we would be getting back to it shortly, once we could get him home. There is no doubt, being out of the hospital walls has produced a positive….but the truth is not without a bout of frustration. Danny is surrounded by his normal world, we both are seeing all the pieces of the puzzle returned to their normal space – and yet we can’t quite feel back to us.
When I say it aloud (or type it aloud), it sounds sorta silly: it is frustrating that he has to nap, it is annoying that we can’t finish hanging our pictures, it is sad that our family walks with the dog feel like a chore. There are people out their truly suffering, that don’t know where their next meal will come from while I wish we had more joyful walks around he beautiful lake our house is next too. But it is deeper than that – it is the reality of our little world may be changing….and if we let ourselves get really dark, it may be lost.
For the past 5 years we have been talking a lot about a lung transplant. Some seasons of life more than others – and when talking turned into a potential true need earlier on – we actually had to start assembling our team, make plans, and give into the importance of fundraising. We have been blessed with an amazing support system of family, friends – even strangers. We met our fundraising goal, we have been told countless times of the number of prayers and love that exists for us – there is an over abundance of support in our life – we have said is the silver lining of our world, we experience the greatest of raw emotions – hope and love.
But with all the support and love does come the expected interest in what is going on, with our largest FAQ being – “what about transplant?” It sounds so simple- the solution to Dan’s struggle, but it actually can be rather complex. There are a variety of factors that determine if your ready (that vary a lot more than just can’t breathe), being accepted into a program, logistics – but the largest, most overwhelming factor….. the timing is unknown.
By many standards Danny meets the “ready” criteria, but by just as many (give or take…) – he doesn’t. There are so many details here, so many stories, examples, stats – I could throw your way to explain the nuances – but the bottom line is: Danny could transplant but face many more unknowns (will the lungs last, will he have months or years before rejection) or Danny could keep fighting to keep these lungs and face a lot of the knowns (decreased energy, struggling lung infection). And this is why we feel like we are living in two places.
In a lot of ways it seems like the transplant time is here. Danny is fighting hard against the infections, has logged the hospital hours, has tried to push past his limits and keep his health as stable as possible – but it is officially not making a difference. We are feeling like we are in such a great place of life we want to soak it up and also keep going. If we take this moment to answer the call and get this transplant behind us maybe we can really keep looking forward.
Yet …. the unknowns…. or even worse the not working. The good moments can be harder to dig out right now – but there is no doubt they are there. The fear of them being so far away while we face the unknown or worse, is so hard to not remember. And at this point when the decision is still sort of in Danny’s hands, it becomes so hard to make.
The other night we sat on the deck and contemplated the options… realizing we could not be more stuck in two places…. so where do we go from here? How do we be patient? How do we be faithful? Do we know what to do? But the truth of the matter is there is nothing we can do but move forward. Maybe that will mean remaining torn in two places, or maybe that will mean a new found terrain of moving forward. Only God knows.
Over the past few weeks I have spent significant time in prayer, practiced taking deep breaths, and Danny and I (as corny as it sounds) are overdoing it in the love department. Any chance we get to remind each other of why we are happy to be in this life together we take it. Whenever we talk on text or the phone it won’t end without a “I love you”. We have laughed a little more and being honest about the elephant that lives in the room with us. And I have to say for this moment, right now, we feel strong, we feel at peace. Probably not for forever and I know Danny carries some serious fears that I can’t fathom, but these good moments, these prayers, the grace to live our life has been incredible and for that I am so grateful. If only God knows – then I am probably better off leaving the questions to him – and in the meantime I will live between these two places, but with my one favorite person.