Its a dark, desolate and barren land that a man finds himself.  
I walked into the quiet room, Max was asleep to my right gently raising the blanket covering his chest. As I searched for a lost item my anxiety began to rise. It was moments later that the ominous presence of the on-duty doctor was felt. I sat down realizing something heavy was about to be dropped. In one motion he swung a folding chair around and was seated across from us. I was not ready, not now, not ever, I was not ready for the words that came out of his mouth. In the blink of an eye I was transported into the barren desolate existence of the impossible choice. Confronted with a question usually reserved for those with elderly parents, or those poor souls picking up the pieces after a tragic accident. The question of what path do you want to take? Do we travel down the road of more machines, more drugs, more care treading on the delicate balance of selfish care. Or do we call it good? Do we say the life that this boy has lived has been good enough. Do we “pull the plug” and let the disease take its course.  
It’s this choice that we wrestled with, tears formed, tears fell down onto the white tile floor. My insides tore apart as I wrestled with what to say. As a father I never thought I would be here. I always knew I may have to face this some day. However I suppose I let myself drift into a state of belief where I wouldn’t have to face this choice.  

As I held my sons hand, my chin quivering and my eyes welling up with tears I am acutely aware of how insignificant I am in this world. I was given this gift so many years ago, and brought on this journey.  

The doctor looked at us and made the statement what’s best for Max may not be what’s best for you. Those words resonated over and over. Was my selfishness driving the ship, or was I doing what was best for Max.  

Tattooed on my arm I have the word Decerto and the the Roman numeral V. In Latin this means ‘fight to the finish’ and the Roman numeral for the number 5 represents the 5% chance he was given to live at 3 weeks old. I am a fighter, and my son is a fighter.  

Until he breathes his dying breath I will fight for him, I will fight with him.