What a wild year this has been, huh? To anyone out there with chronic autoimmune disorders, you know that the absolute worst thing that can happen when trying to recover is be stressed. I’m sure you guys have gotten the same lectures that I have about this. Of course, with what life throws sometimes that can be a real challenge and oftentimes it can feel like a full-time job to find the moment to take a deep breath and relax.

This is the live-in nurse responsible for watching my stress levels 

Every so often there are moments in the turbulence that remind you of what we’re fighting for. I wrote about this before with an analogy about capturing fireflies in darkness. I had another round of inpatient steroids and infusion at the end of November. I have been in pretty bad shape ever since, in a waiting period for this round of medicine to kick in. In the meantime, I go to my appointments and generally do what I can every day to contribute and move things forward.

April studying while waiting for my infusion to finish

One thing we’ve been trying to move forward for some time is our wedding. April and I were supposed to get married October 3rd, 2015. This was delayed indefinitely because a few weeks before that I had a tumor that was found on one of my adrenal glands. With recovery from the surgery uncertain, we had to postpone. Through the spring semester both of us were in school, and over the summer April went into a deep blitz of work and finishing her degree (she did it!) Because of these distractions, we haven’t been able to reset our date yet or start to meaningfully save to make it happen. I want to make sure that I am physically able to not only be present that day, but to make it as special as she deserves. 

In the process of checking with the vendors that we had contacted last year to ensure that deposits were still held and such, I made contact with a couple of the admins for the KU Adams Alumni Center, where we are going to hold our reception. In true small world fashion, they shared their stories with me about the medical challenges that they and their families face. Hearing these stories is always enlightening to me, to know that I am not alone out there in trying to just make it through another day and hopefully blend in as a normal person. By the end of it, not only were we able to verify that the reservation would hold when we were ready to hold the reception, but that it would be free of charge. With this being the most expensive part of the wedding experience, I cannot say how much weight came off of my shoulders in that moment. I cannot describe the feeling of a full heart that I had seeing April get this piece of good news in this over year-long wait for her wedding day. 

This moment, this firefly has given us a renewed determination and sense of inspiration. And as always, it seems to have come at just the right time. God works in mysterious ways, and as I continue on this journey waiting for dawn, I will continue to cherish every single flash in the night.

P.S. Every year I feel compelled to bring a seasonal gift to my specialists, doctors or anyone else that did what they could to improve my quality of life. Not just for them, but for me to remember my humility in that my life is not a given…and that their work is a gift to the people they work with.

Merry Christmas!