Awhile back somewhere early ’18, the tide shifted. Fitting the conversation initiated in a hallway of a remodeled children’s hospital floor that no matter what color you throw on the walls offers no chance for mental healing, just a reminder of how forgotten you can become to the world, medical or otherwise. Often I have acted on instinct and successfully kept impulse at bay. A key to survival in chronic disease. So I made the first move.

“Let’s talk transplant!?” I said holding in the contents of my gut. The CF doc, a man reserved with a compassionate side that I’ve been looking for since returning to Peoria, took a stumble back and glanced for counsel only to find a displaced med student. He went for the scripted ” I think it will be o—“”Let’s talk TRANSPLANT.” I repeated to make sure he tuned into my channel, my reality, my concerns. I was finished with an optimistic plate constantly being served by the CF team as if we keep treating NTM then maybe lung function will recover. Wrong. I have my theories to build upon, understand the uniqueness to this disease, and the forcefield it can generate to hide from even the keenest eyes. A brief trip to a specialist in Colorado solidified my concerns of the battle raging in the two lungs of my son, plus brewing slightly different in the two lungs of my daughter. No two snowflakes are the same. Damn genetics. Time to roll out the next phase. We chatted in a friendly manner and agreed that we would begin the groundwork/ research but not unveil anything to Will until timing was better and we understood the subject in a deeper sense.

This went on for months as we independently gathered our data like two lawyers preparing for debate. When the time came for delivery, neither of us were present. It could not have been worse. The two cents on the situation were dropped and my son was told transplant time is here. Pick those pieces up. Hand me the glue please. Luckily, he’s a chip off the ol’ grandfather and can process quietly, jotting down and sorting into files in his head. I have learned Will to be a step ahead, even of me at times. After all it is his body and soul in charge.