No sooner had a thunderstorm passed than little Mitch wanted to go outside and play.  “Hey, Effie, I think it flooded out there.  Let’s check out the puddles,” Mitch would say with an excitedly mischievous tone.  Ethan was glad to join adventures of any kind so he nodded with a flip of his chin and they headed outside.  It didn’t take long before our boys were soaked from head to toe and it didn’t bother us one bit – for memories in the moment were more important than clothes or material things.   

I loved watching my boys play this warm summer day. As I felt many times before, the little boy in my heart wanted to play with them, too.  But I remembered this was their time, so I just watched them from a distance and smiled, glad to take photos along the way. 

This was an especially tender time for our young family.  Doctors told us our son would die and warned that our family would almost certainly end in divorce.  To compound matters, we were told the journey between now and then would be met with emotional suffering and inconvenience.  It was hard to feel brave when the future seemed so brittle. 

Though I could scoop little Mitch up in my arms that day, I had a distinct impression he was my baby made of sand and that it wouldn’t be long before he’d start to slip away, however tightly I tried to hold and protect him.  I worried about the storms that lie ahead and wondered if my little family would survive them – despite what we’d been told.  So, I tried to drink in this moment in hopes it would nourish my soul for the emotional famine that lay ahead. 

A few months ago, I was invited to speak at a hospital in North Carolina about Mitchell’s Journey.  At the end of my address there was time for some questions and answers.  In the back of the auditorium was a woman who had been following Mitchell’s Journey for some time and spent the better part of her career helping people through death, surviving and healing.  In a most respectful way, she mentioned what the sharing of our son’s journey has meant to her personally, but then she asked what it was all about.  She said, “What is it you’re trying to do?”

I responded that Mitchell’s Journey is about the examined life and learning to live a life of significance.  That is what this sharing is all about.  Everything else is secondary. Yes, people will learn about the disease that took my son’s life; and yes, we aim to help others who carry the burdens of DMD … but the message of Mitchell’s Journey transcends any specific disease.  As I’ve observed in earlier posts, Mitchell’s Journey isn’t about a medical condition, it is about the human condition.  It’s about making sense of suffering, finding hope when there appears to be none, and making moments matter.  It’s about learning how to live, even in the darkening shadow of death, doubt or discouragement.

I’m just a regular dad with more weaknesses than strengths; but I sure love my family and I’m learning to live a richer, more significant life, because of little Mitch.   

As I look at this photo and remember a fragile time when the future was frightening, I am reminded of the quote, “On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% … and that’s pretty good.”

Among other things, Mitch has taught me that storms pass and the sun comes out again.  Like my little son that warm summer afternoon, I am going outside to check out the puddles and explore the beauty left behind.

Though I miss my little boy, I am grateful I took the time to enjoy the moments I had, while I had them.  Because those moments back then bring peace to my soul and a smile to my face today.