When you list for a double lung transplant,you are required to remain within a specific set of miles and hours from the hospital. The lungs can come at any time, from a variety of circumstances and the hospital team, the patient, and the family must be ready to go whenever they get that call- sound familiar? When you go on the list, of course your likely sick enough to need the transplant, but you may not be so sick that you aren’t doing your life. Visiting friends, going to weddings, taking vacations, having travel for work…. you may still want to participate, but you can’t really call Hopkins and say, “can you out us on pause that wenend? We think our third cousin’s neighbors dog wedding is more important than potential organs.”
When we first started talking Transplant back in 2010, it was actually looked down upon if you popped off the list for whatever reason. It was as if you weren’t really serious enough about the transplant. But as the years have gone on and the technology exits to better pinpoint when a patients’ lungs are truly failing – thus the time on the list can (not always) be shorter and the full picture of each potential organ recipient is that much more detailed. So there is some leeway if you do have an actual wedding or trip or worse, funeral that you want to attend. Even still, Danny and I had already come to the decision that once we listed, we were committed and it would take something very unique to pause us on that list. All this to say, prior to listing we wanted to have some fun and do some of things that would be a no-no come listing time….one being a day trip to see our favorite UVA Wahoo!
My baby sister Bridget was in the middle of her first semester at UVA this fall! We had many friends who wore the orange and blue- so we already knew how fun a day at Charlottesville can be …. but were most excited to see it though Bridget’s eyes. Danny and I both went to several universities and altough we had a lot of fun, made life long friends, started dating, and did eventually procure our degrees- we never LOVED college. Neither of us ever felt we connected with the schools (it wasn’t until my final years at George Mason I finally found my groove and began to actually enjoy my department and classes). So we’re so exited when Brig got into the school she wanted, was already involved in her school of study, and excited about her roommate- all signs that UVA will be an awesome 4 years!
Bridget is studying architecture with a focus in historic preservation. I am not sure there is a more scenic school for that field of study. And she already was putting her first semester of classes to use with her tour skills of the grounds! The two of us walked the lawn with Brig learning about its history, the types of columns, and the historic significance of what the buildings and designs represented. She knew the history about the students and their codes of conduct, along with an impressive amount of details about Thomas Jefferson’s vision. It was a beautiful day for walking and we just loved hearing Bridget talk about the school, her experiences, and her growing to do list while there.
Once we wrapped up the history…. we took a peak into her daily life with a visit to the dorm room, learning about some of her current projects, a car tour of the different areas of the campus, and even taking a peak at the “A school” (architecture school)- we took in the sights of Charlottesville! We hit up all the important spots- downtown, the grocery store, Starbucks, and Ulta! Bridget doesn’t have a car at school, so we were happy to help run some errands!
Besides seeing our favorite girl and her beautiful school. An awesome part of the visit was the food! We enjoyed some super tasty dumplings (a food FAVORITE for me) while sitting on the steps of the Rotunda looking down the lawn. For dinner we headed over to the downtown area where we walked around for a bit. It was really nice to just take in a fun Friday night scene, while also indulging in some pretty tasty Mac and Cheese Bowls at a cute diner. Bridget had buffalo chicken Mac and Cheese and I had the seafood… yum! It was awesome to just hang out and wander around together.
The one aspect of this trip that did stick out to us was Danny’s energy. We of course knew that Dan was slowing down these days and as listing was coming soon- we were prepared for daily life to change. But some of my favorite times was being us during our little adventures. We have had so much fun on day trips… exploring new places… escaping in the car …. walking the city streets. When I picture Danny it is someone who is always curious, enjoys learning, and is energized by possibility – so any time he found an excuse to get away from the day to day and just explore I always felt like his eyes were their brightest and his dimples their deepest. Our little day trips and outings are not quite like that anymore- they are shorter, require a rest day before and after, and risk being cancelled- but they still seemed to energize Dan. Being in the moment often provides a distraction. But on this day, Dan was just beat- he had to take a few naps in the car and we needed to opt for more of a riding tour in the car than we planned. We have a few more years to go of bopping around the campus with Brig, so no worries about a low key day- but it really hit home for me what the next couple months could look like with Danny. Little did we know what was coming
Bridget- thank you so much for letting your older, not as cool siblings shadow you at school for a day! We loved seeing you, hearing about college life, and taking in the sights and tastes! We are thrilled you have found your home away from home and an area of study that you are so clearly passionate about! It is such a pleasure for us to watch life unfold for you and we know there is so much more to come!!
Thanks so much for reading and remember to make it a great day!