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As far back as I can remember, storytelling has been a special part of our children’s lives.  At night, the kids would huddle around me as I played music in the background and narrated stories that came to mind as I listened to the mood of the music.  None of us knew where we would go – we only knew every turn was an adventure.  Sometimes we’d laugh, other times they’d clutch their pillows in anticipation – but every time, we’d make memories in real life and imaginary worlds at once.

The magic of story was something Mitchell held close to his heart.  One day, probably soon, I’ll share a story he wrote with his own handwriting in his special journal.  For Mitch, and my other children, stories were not only a means of escape, they became a window to possibility, and a candle that illuminated strengths I saw in them. 

Over the last year I’ve been slowly assembling some content to help other families enjoy the same thing our children did.  I’ll be posting some of this content here over the next few days.  Some of the videos share tender stories of Mitchell and his love of stories, others give ideas on how you can try this form of storytelling with those you love.

I share this because storytelling was a big part of Mitchell’s life.  Even during his final weeks on hospice, he wanted to get swept away in story so he could take his mind off heavy things.

So, whether you have sick kids or healthy kids, young ones, or old ones … this content is for you and anyone willing to experience the magic of storytelling. 

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The day had drawn long, as summer nights often do, and we could hear the early chirps of evening crickets.  For some reason, I was especially tired that evening and was tempted to disappear into the shade of a nearby tree to rest while the kids finished their BBQ at the foot of our secret woods.

“... the best way to prepare for life’s storms is to make a mansion of memories, while the sun is shining.”

— Christopher M. Jones | Mitchell's Journey

I had a lot on my mind that day and I suppose wanting time for myself was justified.  For reasons I couldn't explain, I felt like I needed to stick around and give Mitch my time and attention.  So I set aside my fatigue and gave my son more of my time and attention.  I have never regretted that decision.

I smiled when Mitch said, "Dad, don't you just love corn on the cob?  I think that guy on Nacho Libre was right.  It's the best."  Then he dug into his third corn on the cob.  When he was done eating, we went to a nearby park and played on the swing.  At first glance, it was an ordinary moment spending time as father and son - but looking back, I see that exchange differently.  

I had always heard the saying: "The best time to fix the roof is when the sun is shining."   I've discovered that same principle holds when it comes to preparing for life's hardships.  To be clear, I don't think it's possible to truly prepare for the death of a child, for that is bewildering beyond imagination.  But we can prepare for difficult times in other ways.  

At least for me, special memories that I created with Mitch and my other children now serve as buoys when I'm tempted to drown in a sea of grief.  Though I may be treading the unavoidable waves of grief - those little moments of joy serve to lift my sinking heart and keep my head above water.

At the same time, I don't think the decision to spend time with loved ones should be motivated by the fear of loss.  If one really thinks about it, we are losing everything we know to time, anyway. Tomorrow things may seem the same, but it will be slightly different.  And so time goes.  A year from now, our lives will be more different, still.  How often do we look back on our lives and say with a gasp, "Where did the time go?"  As far as I can tell, whether we're losing our loved ones to death or time, the net effect is the same - tomorrow will be different ... you will never have now again.

Spending time and making moments matter, on the other hand, is sweetest when it's motivated by love. And the best way to prepare for life's storms is to make a mansion of memories, while the sun is shining.  

Whenever I'm especially sad, I tap into that reserve of good memories which then serve as a healing agent, a means of getting centered and most importantly, a way to stay grateful.  Then, the sun will shine a little, even if it rains.  

A few weeks ago, I was honored to speak at the 2017 PPMD conference. In this short address, I shared a tender story about Mitch and the ocean and what I learned about responding to things we can't control. I also shared other sweet experiences that remind me to treasure each moment and take special care of ourselves, our community and our children.

The rest of the conference was dedicated to science, therapy, clinical trials, and other important issues. But for this brief moment, we set science aside and talked about the things we treasure most - how to care for the ones we love, including ourselves.

If you enjoy little stories of Mitch, there are some tiny gems in this keynote. I hope something here blesses your life in some way.

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Evening was drawing near when Mitch asked if our family could go on a ride around the neighborhood.  His muscles were getting weaker by the day, and walking distances of any length were more than he could bare.   As the world was getting bigger for healthy kids, Mitchell’s world was getting smaller, his options more limited.  But Mitch smiled anyway and was glad to be alive.  

Whenever possible, Mitch wanted to go outside to feel the wind on his face and experience any part of life.  Sometimes I wonder if my grief is magnified because I know how much my son appreciated being alive – and my heart is pained that his life was taken away.  But those are the thoughts of a mere mortal, and I know that there is more to life and death than we imagine.  Even still, death hurts me so.

“If it’s the ordinary stuff I long for, then it is the ordinary stuff I should seek after and cultivate.”

— Christopher M. Jones | Mitchell's Journey

So, on this peaceful evening, Ethan took point on his bicycle, ensuring the path was clear for his brother while Mitch tugged his sister on skates.  Mitch enjoyed giving others rides because it allowed him to do something nobody else could.  What made him different also made him special. 

Like Mitch, I loved the atmosphere of sunsets and always paused to appreciate the beauty of natural light.  Just as I was admiring the sky, Mitch looked up at me and said, “Dad, isn’t it beautiful tonight?”  I smiled and said, “Yes, Mitch, it is beautiful.  Just like you.”  I leaned down and kissed his head only to catch the faint scent of shampoo; a hint bedtime was near.  I thought to myself, “How I love having children.”

When I think back on my most treasured memories as a father, they’re found in the most ordinary moments – those times and occasions that seem to hide in plain sight.  They’re the things I am tempted to overlook and take for granted.  I don’t know that I’ve ever confused shallow things for significance – but I have sometimes overlooked the simple things, not recognizing how significant they truly were. 

I have written in the past that grief is my teacher – but what does that mean, exactly?  One example, at least for me, is grief has taught me the very things I long to do with those who are gone are the things I should seek after with those who are now living. 

I don’t grieve that I can’t take Mitch to a theme park, I grieve that I can’t sit on the couch and read books to him.  I don’t long to go on vacation with my son, I long to tuck him in and listen to him talk about his day and share his hopes and dreams.  I don’t miss taking him to a fancy restaurant; I just want little Mitch to sit by me at the dinner table again and hold my hand like he used to.  If it’s the ordinary stuff I long for, then it is the ordinary stuff I should seek after and cultivate.

Looking back, I can see how easily one can get swept up in grief and sorrow – so much so, it becomes a paralytic.  Yet, my grief doesn’t paralyze me; it mobilizes me.  You see, the irony of death is it has taught me how to live.  My pain, for example, has led me to my life purpose.  I don’t know that I would have found it otherwise.  I suppose I can thank my Father for that.  It seems to me that pain in life is inevitable, finding purpose is a choice.

If my son’s journey has taught me anything, it’s taught me slow down and find significance in simple things.