Have A Little Faith in We

When Danny and I first started hanging out one of my absolute favorite things was the adventures he would find for us. Picnics, city exploring, sporting events, country concerts… we were always on the go! The deal with CF is time is just not on your side. Our first year Danny was in the hospital only about 4 times…. but each year the time logged at the hospital started to be more than any time on adventures. We continued to try and travel, but the reality was just getting to a date night could be a challenge.

The truth is the need for hospital time was something you come to accept. It is awful as a patient and challenging as a caregiver, but if Dan’s there- it’s what he needs. The part that’s the challenge is the unexpected. We have had to put plans of trips on hold – like heading to Chicago in 2012. Or we have had to cancel trips in anticipation of what Dan feels is coming – like Pittsburgh over the last few years. And worst of all we have had to trade out travel bags that are packed for Thanksgiving in NYC to leave within the next 6 hours, for overnight bags to head to the ER. We could never really tell what was around the corner and how long it would take for us to return to real life. Post-transplant we did experience that life in stereo January – March – but since April it is as if that life of ours is only a distant memory. We had a quick Hopkins check-in last week that was a little unexpected, but we stayed in a hotel and went home the next day. It feels like life of the unknown is behind us, so we wanted to celebrate.

The combination of germs, air pressure, and distance from our team – air travel is still a big no. We anticipate at the year mark Danny will be cleared, but if you think about it we want to keep those lungs nice and happy right where they are so the trade off for a bit of time without flying is no big deal. Yet this new lease on life has left Danny with an immense desire to see and experience new things. My time away from work has been limited due to the time taken off during transplant and we needed to be able to travel by car – oh and it is baseball season….. so drum roll – Danny came up with the 2017 summer road trip.

We would load up our Explorer and finally hit those places we have been talking about for a few years! It was a holiday week, so I already had some built in time off and we could see family and friends that we have been talking about visiting for years. The pins were placed in the map: Pittsburgh, Chicago, Milwaukee, and Cleveland. We made arrangements to stay for few days in each place and that was that – we were on the road from Friday morning until I came back that next Wednesday and Danny came back the following Saturday. Oh yea, we also planned out the baseball games we could catch….. just about all of them in the surrounding areas…. and we were off.

This trip was a blast. Danny and I really are beach people, meaning being by the water is what we do to recharge and relax. So I worried that this trip would not feel like break. Would we just be worn out and broke? What if it ended up being way too much for Danny? What happens when we finally are with these folks and Danny gets sick, things won’t just be the same, at that point thinking he is well and he is not, they will be worse! But everything in our world pointed to this being a new life and we just had to go for it, so we did.

This trip went by in a flash and has been one of my all time favorite vacations ever. In the car we talked and laughed and pondered about the future – while marveling at how far we had come…. it was a special time to reflect. Then with each new destination Danny would be filled with energy and excitement to get up and go- quite the opposite from pervious years where getting to a nap was the main focus of the agenda. It was a version of him that I have not seen in quite some time and I was overcome by this sensation of falling in love all over again. We felt such excitement to be exploring these new places with each other…. but we also have to hand it to our hosts! All of the folks we got to visit are the type of people who just love where they live and lucky for us really enjoy sharing it. Chicago’s the only place we did not have a homegrown guide (just me from my previous visits) and we found ourselves missing that energy. So a trip that kept us electric with excitement and wonder, that connected us with people who love to share where they call home, was so much more than anything we expected AND we are looking forward to sharing it with you! Stay tuned this week to read all about our trip and take a peak at our MANY photos!

As you read along this week, I do want to take a few minutes to send a prayer of thanksgiving and comfort to the person and their family that made this all possible. Somewhere someone gave permission to give life when theirs was lost…. and that someone’s loved ones took the necessary moments to put their grief aside and help make this possible. Each breath that made this trip a reality was only possible thanks to the most incredible gift you can give: the one of life. As we soak up the sweetness of our blessings and good fortune there is another family trying to deal with the missing piece of theirs. For them we pray.

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