One of my favorite lyrics comes from The Beatles’ ” All You Need Is Love” in which resides the line ” There’s nowhere you can be that isn’t where you’re meant to be.”

My interruption is in order to actually live in the moment, you must surrender yourself to all things. That doesn’t mean to be blindly positive but to see the difference in your abilities to influence others.
Cystic Fibrosis is much like the uncontrolable tide of the sea. At times you are staring down a wave and its capacity, speed, power and are ready. At times even with your guard up, it has the potential to blindly sweep you under with sheer force. In both cases, you have to understand how to get through and return to calm waters. Every chance on vacation, I body surf with both Anna and Will so the physical reality and the words that are expressed have a deeper value.

I told Erin earlier this week that I am in a different place mentally. A lot of family has been back and forth showing love, support and attempting to understand this life. I never asked for that and yet I couldn’t ask for more, it is truly beautiful. However when all this going on and people are in and out, I am separated. I have already climbed to my mental summit and am looking down. I attribute the years I spent in Iowa with just Anna and Will, my commute to work in which is an hour one way and days and nights in St. Louis for my understanding of how this disease feeds itself. My exposure has been constant for nearly two decades now and I am still watchful. 

One doctor here finally recognized how fortunate I have been to see this disease become so different between two people. And that they have such limited interaction throughout their careers to recognize one patient to the next but my experience is more enlightening. Funny how she used ” fortunate and enlightening” rather than destructive and life changing. I suppose that is a simple look rather than through my eyes of two people in which my love for is unmeasurable.

Which brings me to the part again that I cannot find words to convey my feelings. I was asked the other day by the PACT nurse, “Who choose transplant? Was it you? Was it a joint decision?” I like to think that Will was exposed to the right people that help him understand the impacts of choice. At the start of every day I ask him, are you willing? Then we move forward. I know the risk involved and that it has to be a perfect match for Will to get through the critical phase. I know there is a chance, albeit slight, things would get out of control and we may be found helpless against a bacterial war that could take his life. Yet in my own selfishness, I would make that elective choice for transplant 10 out of 10, 100 out of 100, 1,000,000 out of 1,000,000. In my mind, probability equals one. Transplant is the key to a new life. One that I am anxious at the edge of seat to hear how Will can make me understand the definition of BREATHING. And then I look over my shoulder to my daughter Anna. Does that joy instantly change to pain? That is for me fend off. I know her body may face the same outcome as her brother but her insides are battered and beat far worse than his current state. This disease doesn’t stop trying to win but I was built to not be defeated. 

Reflect on this final thought:
“Balance the scales of life so the WAIT does not become the WEIGHT.”