For a long time that question is what I wanted to name my blog. I felt it summed up this life we live. The realities of life and death that are part of our world on a pretty regular basis, yet the fact that what to wear to such life and death occasions are also “normal” to us just like folks think about to work or school – its just life. And how I think we may spend the rest of our lives trying to figure out this tightrope.
For so much of our shared adult lives we have tried living in both words- regular life and CF life. But the truth really was, most of the time we lived safely, always prepared for the sick to take back over. We set up our life to be able to be paused at a moments notice. It wasn’t always a seamless pause…. I still had to work during bumps and we still faced the realities of missing out on parts of life. But looking at it now- we really did live protecting ourselves from getting too entrenched in living in case we had to leave it.
May 2018 we promised ourselves that life was over. This came after Danny’s transplant and the time that is required to heal from transplant. The lengthy and challenging time of healing for the patient and their spouse. VERY LENGTHY AND VERY CHALLENGING. But in that exact moment in time, we had appeared to turn the corner! In fact it was funny how easy we found it to jump into regular life and we were both overwhelmed by both the little and big things we had no idea we were missing out on.
When I used to get home from work it was tough. Would Danny be awake …. would he be ok… would it be a good night or bad night? Now I came home and we talked, we laughed, we sometimes opted to go to dinner! On a random Wednesday night?!?! To think other young married couples did this without a second thought – or it wasn’t a result of a burnt out wife trying to work, clean, run the errands and a husband who couldn’t get off the couch beaus it took too much so take out was the solution. This was like a fun outing that had nothing to do with survival and everything to do with enjoying. I had no idea how foreign this would feel.
And to be honest it is interesting how quickly you can sorta fall into accepting it as reality. From 2010-2016 I would have given anything for this to be our life and then once it was we quickly took it for granted. So it was May 2018 when we said we were gonna stop accepting this new world as the only thing we were capable of and start living bold. We had come to enjoy margarita nights so much…. we used that as the distraction from continuing to flourish. So when we had the thought that now it was time to do what we had put off- we were like deers in headlights. We had to make a promise to ourselves that life would not look the same one year from that May night (a promise made over margaritas 🙂). On our hearts was a move, new jobs and growing our family. We just had no idea how to do it.
Over the next year I am proud to say that we have investigated each of these dreams and worked harder than ever before to invest in each of them. We accomplished more than we thought was possible and it was crazy. But then Dan got sick and sicker and the his sickest since transplant. And we had an extremely defining moment: do we put things back into the box of safe and be prepared to have to pause or keep going. Well we decided to keep going. And this meant a few things didn’t work out. This meant Danny became a patient again and had to choose to be a cheerleader for me who continued to walk forward. It was hard and yet it made us the strongest we have ever been….. and if you have been around these pages for awhile, you know we have had to re-grow and become strong over and over again (Proof it can always keep going….. and should never limit possibilities).
There are a number of things we did from his hospital bedside – coordinated job interviews, looked at Chicago housing, researched and connected with options for growing our family…. all while Danny was in patient. We did not give up. But we also cried a lot, wondered if we were crazy, lived on coffee and not a lot of sleep (not so smart). I just kept thinking of that quote that success shows up at your front door disguised as hard work. It was not necessarily success we were after…. but it was not uncommon for us to have to remind ourselves – for the dream to come true, it was gonna require hard work. And also the acceptance, that some dreams wouldn’t work ….. and some didn’t.
The one I can share with you right now is that I started a new job back in March. It was a leap for us in a lot of ways – but it was something I really wanted. Not because of where I was leaving, but about the possibility of where I was going. This was a company I had kept my eye on for a few years and when I got an email they had an open position (while waiting at Hopkins to see how bad Dan’s recent lung puncture was from a bronch) I forgot where I was and blurted it out. Danny cracked open one eye and said…. go for it. It has been an incredible decision that has not been easy, but showed us that leaving comfort levels wasn’t always a bad thing.
The oddest thing about this experience though was from spring to summer we focused constantly on Dan’s health and keeping life going. A year later from that May 2018, life sure did look different and not necessarily in the ways we had imagined. But also not all in losses either. The biggest win being, we had somehow kept the most life going in regular world and sick world than ever before. Yet, when the moments of quiet came…. when it was a Saturday with nothing to do or Sunday afternoon wide open, you would think we would have kept living. We had done it! Balanced weeks of doc appts and financial appts and work and somehow all the balls were still in the air. Now was the time to enjoy and celebrate – see family and friends, celebrate LIFE. But instead those quiet moments became sacred. For an extrovert it was the strangest thing….. I wanted nothing but my own home, quiet and my boys. Some of it makes sense – we were tired and sometimes sick.
But really, we had bursts of energy or folks that offered to just come and hang with us on the couch. And I couldn’t do it. I am still working my way through understanding it – but I became obsessive about protecting our little life. I didn’t want to share my time with Danny with anyone. I began to resent #BessetteDaily – who cares what we are doing and whose business is it anyway? Danny brought it up a few times – why didn’t I want to be out of our bubble? All I can say is that as we built a life that I really loved, during a period that reminded me regularly of how fragile it is – I didn’t want to share.
The start of a new season, the giving myself time and space to get through this feeling, the results of our efforts coming back to us…. I am starting to ease up. (And I didn’t get rid of #BessetteDaily because feeling private or not, I am an a-type and I will see that thing through to this December to make that 5 year mark!) With family and friends I have called it emerging from my hermit status. Cause the truth is – I do know what to wear to a transplant. Maybe not everyday am I good at balancing or up to it 150%, but I have walked the tightrope of sickness and health. I have come to understand that marriage is probably the hardest thing Danny and I will ever do, and yet how lucky that we do it for love. And if I want to protect our time together…. when if you look just a few years back at our posts transplant almost ended us…. it is sorta OK that I am protective. We have worked hard to get here and have loved even through the losses.
It has been a little while since I have been to the blog, but this post and my return is very purposeful. During all these changes my heart has one message it can’t shake: life is complicated and we are meant to love. As humans we are constantly in a state of comparison. As kids, students, adults, parents – the challenge to be perfect is EVERYWHERE. But I have lived the messy and you know what it still produces some pretty awesome. Things that are “worst case scernario” can still be ok and I want to find a way to give that message. This week kicked off my work with the transplant mini-con work group (an online event in November to share and educate about transplant) and I will be heading to Richmond this week to speak on CF. Coming out of my shell has come with some unique opportunities and I have opted to embrace them (even if I am still a little messy) to encourage acceptance of each other’s journeys and the power in sharing honestly.
What do you wear to transplant? Stick around, you might find out.
Thank you so much for reading and remember to make it a great day.
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