Have A Little Faith in We

Last Friday night my parents hosted Danny and I – as well as a few other party guests- at the country club for dinner. We were gathering to celebrate our 7 year wedding anniversary at the place where our reception had been held, but mom also had another plan up her sleeve…..We had selected this night for dinner because it was the club’s lobster night, so we also ended up celebrating our very own Blue Lobster!

If you happen to follow Danny on social media than you know his handle is something about a blue lobster – yet you may not know why. In fact, my parents knew that is what Danny called himself, but they too had never really heard the story. So today I wanted to share our reason for this nickname and also to capture the details of how Danny so eloquently told that story Friday night.

Blue Lobsters are exactly as they sound – yet it is still very surprising to see one because they are in fact bright blue! Danny and I first “met” one when visiting a very small aquarium on Cape Cod. Creatures that live under the sea are a big source of fascination for Danny. In fact – if we aren’t watching TV the Roku aquarium screen saver scene even plays on our TV. From the coral and starfish to the sharks and whales – they ALL are a huge interest of Danny’s and over the years I have come to appreciate this hobby too (especially when it centers around beach trips). During our first summer dating, my big “good-bye” date before heading back to school included a stop at the Baltimore Aquarium (which is amazing if you get the chance to go!!). And since that first visit, we have stopped in on a variety of other exhibits, both big and small, that feature sea life over the years. Well that particular day we came across our very first blue lobster and once we got over the initial shock at such a bizarre sight, we started to read his story. That is when we learned that he was blue because of a genetic abnormality. We looked at each other and said the same thing at the same time: its a CF lobster. From Danny’s IG bio: “1 in 2 million lobsters are blue to gene defect protein production: 1 in 12k US person have Cystic Fibrosis due to gene defect in our protein production”. If Danny was a lobster he would be blue.

For years Danny has not been a big fan of social media. The last online forum that I recall him being that interested in was AOL’s AIM. He had a Facebook account because in his words “it is a necessary evil” for keeping up with folks. But as we entered the final few months pre-transplant Danny started to post a little more and play around with the idea of documenting his journey. He had admired my few years of #BessetteDaily and we had come accustomed to having a time capsule of sorts that tells the stories of our days. The difference was Danny wanted the freedom to try it without anyone knowing he was on it…. he wanted a hidden alias, thus TrueBlueLobster was born.

This Friday evening, Danny was retelling the story of our discovery of the Blue Lobster. He explained how we found him and how immediately we both had the same thought. But then Danny shared another realization: if that lobster wasn’t blue, he would be red and just like every other lobster, likely to end up on a dinner plate somewhere. Instead this blue guy will have a long life protected and adored because he was rare…. because he was different…because of his genetic defect. Danny’s life has been so different because it has been with the weight of deadly genetic disease. As much as he may try, it is one of the details people are most fascinated with when meeting Danny, but also that same diagnosis has led to some pretty rare and life altering experiences. There is an ease associated with becoming angry or negative about this “abnormal” life- but now, with a chance for a full life on his side, CF may end up being the thing that saves Danny.

For many years Danny hated the feeling of being the “monkey in the zoo”. Often he was invited to speak and share his story – and most of the time he was very open to it. Sometimes these opportunities even led to some awesome trips and incredible evenings out. But there were other days, especially as he got sicker, that he didn’t want to talk about it as much. It had become such a huge force taking up space in his world, talking about it extra seemed like torture. Then add in the questions folks would ask about our private life, Dan’s personal health records, our finances, or our family plans, that would make you feel awkward for every agreeing to be an open book. However this second chance of life has seemed to ignite something new in Danny – he considers sharing more now or finding a away to motivate folks facing their own demons. Thanks to CF he has had a journey that has led to a chance for a long life, with the appreciation for what it really means. Does the Blue Lobster feel the same? Who knows…. but we are so grateful that our own Blue Lobster has found his way to gratitude for his circumstances and that he treasures what makes him unique.

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