Earlier this week a friend with some reservation asked me a question about Max. The question was simple, but difficult to articulate. How do you ask someone tactfully what the outlook and or timetable of their sons life is. Given that less then a year ago we were told Maddox had 6 to 12 months to live I felt it was certainly a fair question. I thought about how to honestly answer the question. While its true that man of the drivers that generated the 6 to 12 month time frame have since been unexplainably removed, the depth and scope of the unknown is just as vast.

When I was younger I was fond of the quote attributed to James Dean “dream as if you’re going to live forever, live as if everyday is your last”. As that idea continues to grow and be reshaped in its application that was in so many words my answer to the question. Everyday we look toward the future with optimistic hope, fully embracing what the future holds. The lives that Max has impacted and will continue to impact. While also being aware that every night our nightly routine plays out after rocking him to sleep I carry Max and his feeding machine into his room laying him in bed. Everynight I pause and look at my sleeping son at peace with the world, and every night as I kiss his forehead for a split second I pause. The pause is not out of fear, but out of respect. Respect for his strength, for the last 4 years, and respect for the journey. A heart of thankfulness for his life and the strength that he has lived it with. Every night that pause keeps my heart soft and my spirit at peace with whatever the next step in the journey is.