There are so many moments, words, feelings, and scenes that live within me about transplant. After a serious talk with myself, some beautiful wisdom from friends and family, and the realization that all this change may just be for this moment right now: committing to truly getting all of these things out from justing living on the inside….writing the story.
For years Danny’s CF was his…. when he shared his experience it was his illness or we would talk about it like its own person “CF”. CF was our roommate, CF spent all our money, CF chose our travel plans for the year (spoiler alert – none), CF interrupted dates and holidays and birthdays and life. It was never really mine. This can be weird to have something that dictates your world so much and yet its not your own.
Over the years I have gathered, assessed, and really respected the many reasons why it wasn’t mine. For starters, it wasn’t happening to me. Then there was the whole reality check that Danny and CF had been in a relationship a heck of lot longer than we had….. and that it would always be that way. CF got its way…. CF had more power…. CF was comfortable in the seasons of discomfort. Me? I was the new girl. Dating this never bothered me. Worry me, yes. Frustrate me, sure. But oddly enough the respect I had for it, the realization of the role it played in Danny’s life – I didn’t really begrudge it. It wasn’t even really mine and oddly enough we could coexist. Marriage has been a different story. Truly Danny and I had joined our lives and thus CF became my forever too. Suddenly it was harder to accept.
All in all we managed and I think it helped that the times it was becoming impossible to live with – Danny was feeling that way too. For most of his life he had really learned to accept it, but it was changing even for him. In fact we had a way of being mad at it together. In marriage you are always looking for a chance to be a team and CF gave us that chance in a new way as it took on a new path. One of the things I have come to learn about life is that change is inevitable and if your lucky, your growing in that process happens too. But when it can get really hard – we all revert back to what we know. As CF life got harder, scarier, more uncertain and at a faster rate than ever before – everyone sorta took back the roles they had known the longest: Danny – patient, CF – boss, and Jackie – new kid.
My street cred had grown….. my knowledge base had expanded… and my fear of hospitals had vanished (I think it was somewhere between the Christmas Eve of the Eve that we spent all night there….. or when I realized the ER staff weren’t unfamiliar faces anymore). But still I wasn’t the sick one and in the end I often found that reminding Danny, his family, my family, our friends – MYSELF – these moments were in fact not my first rodeo became way harder than just shutting up (thankfully that lesson would come in helpful later too…. if you shut up a lot more, then when you speak people actually really listen …. it was worth it). And quickly we could find ourselves all sitting in our own camps alone with our own perspective, feelings, and story.
On November 30, 2016 that all changed. Danny had his double lung transplant and we embarked on a brand new adventure that was completely unexpected, very scary, extremely overwhelming and also the best gift we have ever received. It saved Danny’s life and it gave us a whole new way of living ours. All of those who are involved intimately with the process – our medical teams, CF Foundation, other families who have been through it – say the exact same thing: you are trading one disease for another. I have decided that fact is 100% true…… and you will never understand it until you are already living it. We knew how to do a life of illness… we knew about CF and Danny and I knew our roles – patient and caregiver. But transplant broke us down… wore us out…. and demanded a transformation of our life: all that was left was husband and wife – THAT was the only way we could be and the only way we would survive.
Its amazing how different life can be resulting from what feels like a long journey, but is not that much time: November 2016-July 2018. Yet for how different we see our world, our life, and each other it feels like a lifetime of change. Since we have restructured our foundation it has been challenged in new and unexpected ways….. but the roles we play aren’t at all like the CF versions. We learned those won’t last this life, we need the roles we were meant to play (even though I know for certain our 25 year old selves at that alter had NO CLUE what it meant) and now it is our story – not Danny, not mine, not CF’s. And it is one that I intend to sit down and start to really tell.
Thank you so much for reading and remember to make it a great day!