"Work, Life, and Family" by Joe A

It’s almost midnight, and I’m just wrapping a very long work day.  I saw my 5 year old son today for only about 45 minutes: 30 minutes in the morning and 15 minutes in the evening (which I raced home to catch).  This isn’t too common but it definitely happens and is a hard pill to swallow nonetheless.  I’d much rather be with him than do anything else - period.  The “work/life” dilemma is a typical one, but in the back drop of being fortunate enough to have the issue, I’ll embrace that struggle every day compared to where I thought I’d be.  

Before Trikafta (and now Alyftrek), I thought I was keeping up appearances for those around me to an extent, seeing where we would land, and fighting the good medical fight, always mindful of the eventuality of CF.  Maybe my loved ones were just as mindful, and didn’t want me to realize how mindful they actually were - who knows.  

Around 7 years ago, my wife and I decided to try growing our family (beyond Henry, our dog), and I went through the motions, sadly on autopilot, never letting myself stop to think about it.  “Do you have any questions” she asked, along with the conveyer belt of  healthcare professionals necessary for us to have a child. “No”, I always responded.  And to my wife I’d add “just tell me where I need to be and when.”  I couldn’t fathom being the guy in the Lifetime movie maybe 5 years later, unable to keep up with each breadth a battle in itself, having to be content as a quiet observer to a child I brought into this world so he can live most of his life without a father, if and when CF has its way.  I’m usually more thoughtful but on this, I let my wife handle the thinking.  

Call it God, or science, or both - whatever you prefer (and I’m going with God for the record of St. Peter’s book when I get to the pearly gates) - I can’t deny the miracle of (i) my son, born thanks to IVF/PGD and the product of my finding the perfect person to make a life with, and (ii) Trikafta changing everything for my health, all around the same time.  

So on nights like tonight when I have to work late and force myself to do something I’d really rather not, I remind myself of how lucky I am to be able to work and have something and someone to work hard for, and look forward to the morning when my son will undoubtedly wake me up at 530am to ask how my work went and if I want to go downstairs to watch ER (surprise, surprise, I like a good medical drama).