Have A Little Faith in We

This blog was created to capture our lives and the transplant is one of the biggest aspects to date. While going through the experience I blogged about updates, emergencies, and the emotional toll it takes. But the story itself was something I have not revisited as often as I would like ….  well and life in of itself has caused quite a few delays over here. However, it is important to us to remember these stories, have these experiences in a place to reference, to share, and to learn as we face new chapters. So just like I am getting back to recapping life from the last 6 months – its also time to get on with our transplant journey.

As a refresher we have already shared what it was like to list, what its like to be given a workbook on death, receiving the call, and how being #2 on the list actually was our #1…..  for today – driving up after the call.

Like I shared in the call post it was a really rainy day which risked adding a lot of traffic and time to our drive. When talking about listing we contemplated actually relocating. This would be hard for sure:  expenses of rent in two places, what about Quinlan, my job, being that much further from family….. at this point Hopkins had felt we were close enough (it was recommended that we be able to get to the organs in 2 hours after getting the call) but for anyone who leaves in the Maryland/DC/Virginia area – a commute to Baltimore form Northern VA can turn into 3 hours in the blink of eye…. so we worried about this decision. But just like everything else with this process we thought “we will just get Dan listed and go from there”. There was a chance Dan would get sicker and we would have to move closer, circumstances could change if we are waiting for months on end and moving would be better, etc…. none of those things would ever come to pass.

Quick pause: this is one of the many lessons from this life of ours. Control…. planning…. none of those things are real in this situation. The hours we had spent wondering about a move and in a matter of seconds it would never matter. Crazy…. Whats the quote about life taking care of itself while your making plans???

So it ended up that we took back roads to the beltway and Baltimore. In hindsight this is one of those God sends…. the drive to Baltimore we had made for YEARS. During our dating life it was always for fun -we are Orioles fans and spent many a summer day enjoying Camden Yards. Recently though that drive did not represent happy times. And in the very recent months, it usually brought up a lot of worry and fear. Driving up with Danny – would he come back with me? Would it be a long admittance? Would this be the trip that resulted in listing? As the wheels would turn along those roadways my head and heart would have been swimming with every emotion – while also silently watching the clock wondering if we would make it. But instead we were on more rural roads that demanded my focus and provided a distraction for Danny as he read out the directions. Oh and the rain was a natural speed control and again I think another God Wink…. we didn’t have time to weigh out all the worries…. we literally had to just go step by step.

Eventually I got used to not really knowing where the heck I was or how much longer the trip was….. so it gave me time to also think about this moment. First we had the practical things to handle. In our world I am the breadwinner and Danny is the finance manager – it is a very odd 50s wife model: I didn’t know account passwords or how we managed our bills – but I made the money. And no matter what this next chapter held: recovery or death I was gonna need to know it all. Danny feverishly scribbled in a notebook passwords, account numbers, and if for some reason he had the wrong password where I could find it saved (Oh the water bill account is saved on the Mac, but the electric bill you will need Dan’s laptop). Due dates, how to transfer money through accounts, what to check before you hit pay – ya’ll this wasn’t what either of us pictured. The most precious moments of our marriage and we are still talking logistics.

But that’s the real deal…. we had not prepared and I was going to need to manage it all. You don’t see that in the movies, folks – but for real life this had to happen.  Eventually I reassured Danny that anything I couldn’t figure out I would just call. My husband is having a double lung transplant seemed to be a pretty decent excuse for not knowing my 4 number pin. So we turned to the other part…. and Danny kicked it off pretty powerfully – “What was your favorite day we ever had?”

Someday I will have to ask Danny to write his detailed account of this ride, because for me the pause I took was HUGE. What was my favorite day of us? What a good question….. and is it weird that the wedding day wasn’t the first that came to mind? What about our first few dates that I fell head over heels in love? Or even the tough days…. the days that were hard and scary and painful and that we survived? Or do I say a day that will surprise him in hope of getting a laugh or breaking the tension? Who the heck knows how long I sat there – and eventually I answered with “the regular days”. You know the ones where Danny was behind the steering wheel taking me on some kind of adventure. The days where we were doing life together…. the moments we walk the dog… or decorate our home…. or watch a movie…the truth is I said those days because if this day didn’t go as planned those are the moments that would leave my life with the greatest void.

Yes, I loved our honeymoon or the experiences we have had traveling to share our story. The day we brought home our pup felt as important as any potential babies (and maybe the only one we would ever “parent”)…. but if Danny never returned to me it would not be the big days that would haunt me – it would be his boots that lean against our shoe basket, his electronics that travel with him like a little boy and his tonic trucks, it would by my kitchen that would sit empty and unused, or the deafening silence of no TV – no sports scores – that would just evaporate. Those are the moments that always get to me when he is in for a tune up. Those are the little details of my life that in the oddest way seem to define it. For better or worse, our greatest days are sprinkled throughout – it is the days just doing our life that I love.

Danny gave his answers – and I am pretty sure they talked a little more about Saint John – but it was after that big question that we both were hit with the reality of this day and the ability to talk more just wasn’t there. In his lap there sat that little notebook that he would keep scribbling on as we went – but over all we just sorta stared straight ahead. Over the course of that drive I got agitated with myself – “say something…. say anything….. you have to talk” and I guess Danny must have been thinking the same thing as he shared how he meant to have a playlist for transplant day driving. I laughed and shared my plan to collect a list of topics of conversation for this particular car ride so our minds would not wonder. Neither of us ever got around to those to do items.

A few times Dan would ask the status of his parents (at one point I was on the phone with his mom and the second I hung up he asked me to call his mom and give her an update…. he was distracted for sure) or to check the estimated time of arrival. We had the experience of different Hopkins folks calling to see how much longer, reminding Danny not to eat in case this is it. Oh and simultaneously reminding us this was a huge moment. But in the main – we just sorta drove and that is when the part of my brain that processes started to take it all in.

When Danny and I first started dating my absolute favorite thing was to jump in the passenger seat and go on an adventure. We logged hours touring DC by street lamp light in his old Explorer or enjoying the winding roads of the Shenandoah Valley. It is in the seats of cars we learned about each other, shared stories, and dreamed about our future. Road trips – big and small – are sorta our thing – with Dan leading the way and here we are with me driving and on one more final road trip. Marriage is a trade off…. sometimes you are the leader and sometimes you are the follower. For years I had been so happy to be the follower…. honestly I would follow that boy anywhere. It hasn’t been perfect, but the one thing that has never changed is how much I love him…. I would truly do anything for this guy and in the early years that really meant a fun partner to go adventuring.  It was in the later years it would mean blind faith, love and trust as I followed him into the unknown worlds. And now to really shake us up we were not just facing this big surgery but also switching roles – handing over the leader role as Danny gave me the passcodes to our life and I drove us. My time as supportive wife was shifting and I was moving towards an intense level of care giver and 100% curator to our life. It wasn’t about managing until Danny returned home, this time it was bigger – it was keeping the possibility of life open and on a lot of days, for both of us.

Eventually we hit the part of the drive to Baltimore that is the same no matter what roads you use coming from VA…. the skyline.  And that was it – a ride that had been so different – in moment in our world that was 100% unique – and yet its the same road… the same view… and we would begin to wind our way through the city to the same hospital. It would never be the same…. but in those last few moments life really was the same and we were grateful.

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

Jackie