Have A Little Faith in We

Its not always life versus death. Sure there are moments that are fueled by the reality that life is so very short and that death has never been that far off base in our world. But it is more often the feeling that life as it is now or even just regular life never felt possible. Listening to one of Claire Wineland’s videos about the fear of being healthy, which meant a job and bills and responsibilities – for someone who has never had that as their primary responsibility it can be surreal to imagine getting there. And then when you do…. it is VERY surreal.

This June we were invited to COTA’s Miracle Maker Event in Indianapolis to share our story. They came to visit us in Virginia that spring so we could have an intro video to share (check out my instagram highlights for a little behind the scenes), and that alone provided a special moment to pause and reflect that we can share our story, because we have made it to the other side. So the gift of a trip, a chance to see a whole new city, and for us to share our story in a more official capacity was a huge honor. And really that is how the whole trip felt – an honor to be savored.

First up the plane ride. As the cost and challenges of travel increase, I have stopped taking for granted that I am able to fly. My health, bank account, and lifestyle has never limited that chance (dictate the destination yes, but prohibited the opportunity, no).  Since Danny’s health started to decline over the last few years travel was something that had to go. Our last flight together was in 2013 and Danny had experienced a panic attack from the pressure on his lungs during our short trip. Once Dan got his lungs, travel was something we looked forward to exploring again, but the dangers associated with flying for a transplant patient are numerous, so Hopkins forbid it for at least a year.  We still got out and stretched our adventure legs with a road trip the summer of 2017, but there was something alluring with the idea of being able to board a plane again. Our trip to Indy, to share the blessings of our experience, would start with our first flight together post transplant. And if you saw me in the airport line waiting to board the plane a little misty in the eyes – yea this was not lost on me for a second. The blessing to have a reason to fly and then the ability to fly  – we both were a little overwhelmed with where life had taken us – and the sobering reality that not everyone has these moments. The trip started out pretty darn good.

COTA had been so kind to offer a litany of activities if we were interested: the Speedway, the zoo, a variety of great restaurants and some really interesting museums – but we couldn’t seem to settle on anything. At first I felt like what a waste! We had this great chance to experience a place we have never been and we couldn’t make up our minds. The truth is we had experienced a bit of setback that late-spring/early-summer, and just the idea of away was good enough. But stepping back even further, I really think we were mystified enough at our new life where we could set out for a dream and achieve it: share our story. We could make travel plans and keep them LINK. And that after all these years ( we were celebrating 13 years dating this weekend actually LINK), all the ups and downs, and after feeling like transplant took us to the brink of losing everything, only to bring us back to a really beautiful life – we were just happy to be in a new place together.  And that is how we spent our weekend.

The hotel was just lovely! It overlooked a triple A baseball stadium and was well equipped with yummy food, drink, and Starbucks right out our finger tips. We enjoyed napping, leisurely showers (and a little spa activity in the room with a robe and my own face mask kit), going out to walk around when the mood would strike, or just enjoying the books we had lugged along when it didn’t.  For a girl who has her brain running full speed often, this sort of break ANYWHERE is always such a treat!

Being in a new place also allows you to find great perspective, so Danny and I spent so much of this trip just talking. Those kind of honest good talks the start simply enough and before you know it hours have passed (the exact same way I had fallen in love 13 years earlier….. listening to him just talk). We were able to regroup from our crazy turn of events in a way that home had never allowed. We got to enjoy the unique blend of the familiar comfort of our strong partnership, while appreciating the exhilaration of trying something new as simple as a fun meal or cute downtown stroll.

But truly best of all was the reason we had come – to share our story – and being able to help Danny prepare. We both have been honored with the chance to share our stories together and separately in a variety of different settings. As the years and journey have passed along, we have had more to share and additional opportunities to practice. In the recent years we both have found a really good stride, which means our presentations have gone really well. The good news: that is such a gift, to know and feel you have done well! The not so good news: the pressure is on to keep repeating the success. COTA has changed our lives (another post on that is coming up), and we needed folks to know the work this organization is doing IS life giving – to people who are fighting to stay on this earth. So Danny wrote and practice…. wrote and practiced… and we worked through it together. Those writing, reading, editing, and practicing sessions will be some of our most treasured moments for the rest of my marriage. We walked the transplant journey in a completely new way and discussed pieces we hadn’t been able to prior to this moment. It is a gift to survive the difficult season, it is a blessing to learn from it, and it is a privilege to grow together from it. In the hotel room, we were reminded of the privilege… and then Danny got to share it with others (a link to Dan’s speech is at the bottom of that post).

We came home from that trip completely refreshed and with an incredible new realization of the world we have come to find ourselves in. Yes, nothing was perfect and we still were sad about some of the challenges over the last few years.  Sure, we still had a lot of hurdles that lie ahead (we had only had two incomes for the first time in 6 years for a few moments) and quite a few unknowns that still can jump out and spook us every once in awhile (will Danny’s health remain so stable?). But the truth was right here, right now we had so very much – so very much for us, but also in comparison to so many in the world and it was really time to start thinking how to use it.

Thank you so much COTA for having us at this beautiful event! This organization has breathed life into our world so many times over the last 8 years and yet again it has provided us with a breath of fresh new air as we arrived back home. We have been blessed and there is no telling how this all could turn out… how amazing!

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

Jackie