CF Life & We are Back….. Sigh

Yesterday I had the opportunity to speak at VCU’s CF Family Education Day and it was kind of a crazy experience for Danny and I. In the fall I was asked about doing this event. March seemed so far away but for the first time in our lives we were actually making long term plans so it came up at a great time. In January Danny was going to an academy where he would be training physically and mentally for a job that he never thought was possible due to his medical status. With lung function at 105% and a completely different picture of health that was now possible and Danny was starting  brand new dream path (ya’ll he had gone to a physical try out and passed – we never thought it could happen). Our world would completely shift and suddenly for the first time his career was going to be our priority. There would be limited time off while in the academy, so we actually opted to take this weekend away in Richmond as a sorta of mini-trip. It’s my birthday month, he would be two months into a crazy busy training life, and we would be in the midst of some heavy duty family expansion plans. This weekend away would be a perfect getaway to look forward and how incredible it would be to share our story of sorrow that had turned into such hope. A dream come true in so many ways for us both.
Danny had put in a long day & was telling Q this is how academy life would be in 2019
September 2018
On Monday Danny had surgery in an attempt to stop the loss of lung function that is declining so fast the words “second transplant” have come up. Then on Friday at one of our appointments we were told that gaining function back post surgery would look like 60-80% best case scenario. Danny was encouraged (I use this world to be kind – cause in reality it was told) to rethink his career aspirations and maybe a 9-5 desk job is best. We were encouraged to enter into the idea of infertility pretty carefully as my body is under extreme stress (hello broken bladder) and we are back in a serious period of unknown stress: not ideal for trying to get and stay pregnant. In between Monday and Friday, Danny and I had a terrible time with him navigating hospital life and feeling so much worse than he expected too and me trying to close a big chapter of my career and open a new one. Attempting to balance help from family is a double edged sword. Mix in a decent amount of missing sleep, schedules that can’t seem to align (I am needed at the hospital and fulfilling my three week notice at my job), weather delays and the all too familiar haze of sick life: unpredictable, exhausting, confusing and the only remedies: comfort food, sleep, and wasting life away scrolling the internet or Netflix. Not a great week. As I took my place at the podium I actually had to swallow a huge lump in my throat and pull the tears back with one giant sniffle: I wasn’t talking to a room of people “where I was” to invoke hope and inspiration….. I was standing with my tribe feeling as overwhelmed by CF as everyone else.
The day of Danny’s physical assessment I was on pins & needles so distracted myself with a nail date with my mom, sister Brig & Baby Millie
October 2018
This morning Danny and I hit breaking point. He asked for me to correct the way he had requested his coffee, that I had screwed up. And I brought up the fact that he dared to change the plans we made this week with my work schedule and needing to be at the hospital…. and enter stage left: tornado. When you are in it – you’re just MAD. All that kept swimming around my mind was “how can he not get it? I am doing my freaking best and balancing this change in our life while still maintaining  what it is we say we want: a life!” While Danny was thinking “my health has shifted to abysmal and you want to talk about keeping life going”. We took the ever famous “time-out” – thank you to our therapy coaches Fred and Maureen. Everyone stops, everyone separates and everyone takes a breath. I grabbed Lysa’s bible study I mentioned Friday and dived in. By the time I had just about finished a chapter I was practically laughing. Here we are ya’ll – Danny and Jackie and CF – table for three please! It is so incredibly hard to stay in the state of hope and strength we have cultivated, that has saved each of us and our marriage. It is so much easier to go back to “what about me” and shout everything you are mad at and feeling …. in hopes that something somewhere will answer your hurts and fears and pain and just make it all feel better. And if we are all being super honest – we want it to be our spouse, when in reality they are doing the same thing and putting that sort of pressure on another hurting person – you are gonna come up disappointed.
Danny had passed & we got offered Capitals tickets so celebration night
October 2018
It came to me as clear as day: Danny is pushing the boulder of his health up a hill and feeling crushed by the weight of  it and how it seems not only refuse to go up the hill…. it keeps sliding down.  While I am pushing a boulder up the hill that started manageable and keeps adding more and more weight while I try and push I can’t seem to keep up with the demands or make progress. And guess what? Our boulders apparently are competing and instead of cheering each other on or putting our heads down to just push forward – we are lobbying insults at each other and saying what the other one is doing wrong. No partnership here…. in fact a competition has broken out between two competitive spouses not good. Placing the book down, chuckling to myself, journaling a moment to God and then I went  to find Danny and gave him a huge hug…. and we both just sorta laughed (for those of you reading this and thinking yea right or that is so not my relationship…. this is what hours of therapy teaches you…. how to let go …. this did not used to be how it would go for us – we could sit in our anger for days….). For experts in the unknown, we had messed up.
I laughed how we spent the whole night talking about life to come & hockey was sorta a side note…. how different things had become
October 2018
Here is the deal. Danny’s surgery is just a few days old and as of yesterday he was just starting to keep the liquids down. It was a laparoscope procedure, but since he is such a slender guy – what usually only require 2 incisions for most folks, he needed 6 and they had to preform that esophagus wrap with a lot more poking and prodding form different angels. This is going to make recovery harder. But he is getting there. We don’t know the outcome…. people can live at 50% or 60% or 80% …. in fact we learned how crazy rare and fluke it was that Danny ever reached over 100%. We can’t look at 100% as the goal or that his health is completely failed if it is only 50%….. in fact right now we can’t look at anything but day to day progress and wait. It is likely we won’t know where everything stands until summer. This is hard and scary and frustrating – but even more reason to stick to our year of HOPE. Now is when it really counts.
Sharing our new plan & celebrating with family & friends
October 2018
For me – there is a lot of progress going forward. My career path is taking a big turn, my health is demanding way more attention (and I have not been drinking diet coke for months, working out as I can and down a few pounds – I thought I was being health aware), blog life getting so exciting, and this new approach for expanding our family is putting  a lot of weight and worry on me. Any one of those things would be stressful – so all together while Danny’s life is in crazy flux, is gonna be a hot bed for worry, anger and stress.
At Hopkins getting their blessing & this was the first moment they offered it but we just needed to figure out how to stop the small lung decline
October 2018
So now we know where we stand and again it is about as opposite as we would have guessed when we had specifically pictured the weekend of March 2 back in the fall. But in a strange way, what an opportunity. We literally pictured the days of March 2 and 3, 2019 and now that we are here we can either be angry as hell at how different they look or be grateful beyond belief that we have built the tools to manage fear, stress, tough health and now is the time to put it into overdrive. As humans, we will likely do a little bit of both….. but as folks who have witnessed miracles we are going to do our best to reset as many times as it takes, just like today, and keep pushing for our best. And to have this perspective and learned these lessons, it is because I am part of the tribe I spoke to yesterday. How lucky to not be alone in this life…. its OK that I wasn’t speaking as a person that has made it through, in fact it may be been more powerful to speaks as someone walking next to them.

 

We will keep you all abreast of what life looks like next for us and in the mean time thank you for the space to be honest, to be real and if you are in a space that looks messy and hopeless….. I can’t encourage enough the importance of therapy, getting on your knees even if it is to scream for help from God (or scream at him), and being okay saying this is hard and I mess up. These things have transformed our life and I know it can do the same for you. Now off to give Danny one more hug and “we can do this….. even if we screw it up over and over again”.
Thank you for reading and remember to make it a great day!
Jackie

2 thoughts on “CF Life & We are Back….. Sigh

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