On Monday as Danny reviewed the many piles of medical logs, bills, notes, and paperwork he texted me a picture of the 5 Wishes booklet with the caption “ I can throw this away now, right?” This little booklet had been given to us as a way to capture Danny’s directions during transplant. It reviewed the many details from how he wants his hair to be addressed if he remains unresponsive to the decisions to be made if we have to say goodbye. Not a pamphlet on recommendations or some literature on what to expect, but an actual workbook on how to execute Danny’s wishes. From the moment it was placed in Danny’s hands until the moment we remembered we had never filled it out as we raced to the hospital on call day this thing haunted us. It represented all the fears of what could happen, brought to light the burden and struggle placed on the family, and reminded us all of what could really happen. 5 wishes was pretty sobering and yet just like that it can be tossed.
Today the Facebook memory of what you are doing a year ago popped up for Bessette Daily for June 13, 2016 and there it was: Dan was at Hopkins for a stay in tune up mode. This was an exacerbation that was part of the bizarre poker game we found ourselves in…. keep betting on these lungs or was it time to fold? We looked for clues, presented a ton of what ifs, and we wrestled with the desire for Dan to come back to our life as is or to wish for new one via transplant. As with many of the stays over 2016 we tried to predict: would this be the stay that tells us to list.
This weekend as we tried to remember when we had last cleaned out the car trunk I said to Danny – “when you say its been a bit do you mean pre-transplant or post-transplant.” And with that we wondered aloud, was that how we would now define life – before the lungs or after? But Danny put it so perfectly, “Actually I am defining my life as pre-April and post- April. And that is when it truly hit me, after 6 months we have turned the corner and why we did this whole thing is making sense.
Over the last few months – and really years – I have used this blog as a place to share my fears, release my frustrations, and explain our experience. I have not been afraid to be raw, to be fearful, and to highlight my weakness. For me it was a chance to say what I felt I needed to say and the opportunity to try to both explain and accept that our life was different. So now it is only fair to celebrate the incredible joy that has found its way to our home.
For years we would rarely travel for fear of cancellation, as a result of mounting debit from medical bills and living in the Northern VA area with primarily one income, and the importance of saving my time out of the office for medical needs. When we would make plans the chances of them actually happening become increasingly rare. Danny had to focus on his health – especially over the last 6-9 months – leaving the pressure of getting life handled to me (if I forgot to get the trashcans dragged around or get to the grocery store we would be stuck). This is normal stuff and nothing compared to the scary ER visits, the sleepless nights propped up in hospital chairs, or the fears of losing a job because of insurance – but we learned to weather those too. All the while as Danny’s lungs failed and he struggled to breath, apparently I was left me holding my breath for the what ifs.
This week we are planning a road trip for late June the has all sorts of special meaning to us. This evening Danny has driven himself to Baltimore for an early AM infusion. And Monday morning I hollered out a cuss word while conditioning my hair realizing I had forgotten the trash cans AGAIN and our trash piles would be completely out of hand waiting for the next pick up day, only to find Danny had taken them out the night before. Life is changing – and I am not holding my breath anymore. We get a chance to look at our budget and look at our adventure wish list and actually choose something to do! Danny’s life as a professional patient is slowly fading into just a facet of who he is and not what defines him. And when I come up short on the responsibilities portion, I have someone who is willing to remember and help too: o yea, I am married. Life is incredibly full, bright, and blessed.
As I commute to work singing at the top of my lungs and not balling my eyes out. When my prayers to God are “Thank you thank you thank you….. and did you know this is how it could be when I cried to you before” instead of “God I am breaking…. please sustain me… please promise me we will survive this”. That is when I have to remember that nothing is forever, but just as the season of scary came so did this period of incredible peace.
Thank you all so much for praying with us… walking with us…. I am in awe of the miracles that have taken place and not taking one moment of this life for granted. As Jake Owen sings “We all want what we ain’t got”…. but right now I don’t just have what I dreamt for, I am blessed with incredible things I didn’t even know were possible. For those of you who aren’t in that season, just keep going and my prayers are with you. Don’t give up…. we almost did and had no idea what we would have missed.
Thank you so much for reading and remember to make it a great day!