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Natalie and I just returned from North Carolina where we shared Mitchell’s Journey with the pediatric medical staff of New Hanover Regional Medical Center. We were so inspired by the incredible kindness and compassion of their staff, hospital administrators, and surrounding community. On this trip, we shared two presentations: What Happens on the Other Side of Medicine (for medical practitioners) and A Practical Guide to Making Moments Matter (for parents and caregivers).

“ That is what makes all of this journey worth it ... to see other lives blessed.”

— Christopher M. Jones | Mitchell's Journey

There is another side to Mitchell's Journey that isn't always apparent in our grief stories, and that is the practical, "I can do that!" guide to making moments matter. It was so fun to share that presentation on Thursday at one of their events. We shared what our family has done over the years to make moments matter and offered 6 ideas on how to turn ordinary moments into extraordinary ones.

Our hearts were overflowing to see parents come up afterward and express their feelings and personal discoveries. One young boy came up to me and said enthusiastically, "Do you know what we're doing tonight? We're having our first family night." He was so excited to spend quality, focused time with his mom and dad. I nearly broke down in tears. Other parents said they felt like they had an awakening. That is what makes all of this journey worth it ... to see other lives blessed.

Another woman, Stephanie Burney, also spoke. She’s a local mother who lost her daughter in a tragic zip line accident almost 2 years ago. That was her first time speaking to an audience about her tremendous loss and she did a wonderful job sharing the impact a medical community can have on the lives of families who experience any kind of medical hardship.

After our time with the medical community, we spent time with two gentlemen who own a funeral home (Wilmington Funeral & Cremation) that we were honored to meet last year at a different speaking engagement. These two men are some of the kindest and most compassionate people I’ve ever met. They introduced us to a family who lost their 19-year-old son to DMD a little less than a year ago. So, on our last night, we spent time at their home to learn more about their story. We were so inspired by their goodness. There are stories just like that of little Mitch, all across the world. I wish I could tell their stories of faith and courage, love and family. Perhaps one day. That would be a dream.

This has been a lovely, healing trip. There's something very special about the people of Wilmington, North Carolina. You may come into town a stranger, but you leave as friends. That's not their slogan, but it should be.

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Day 1 Speaking Event: What Happens On the Other Side of Medicine

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Day 1:  Prior to speaking to NHRMC staff

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Day 1: Afterward, NATALIE talking to participants

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Day 2 Speaking Event: Making Moments Matter

You can read more about this event here.

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Day 2: NUNNALEE ON THE MOVE

https://www.nhrmc.org/nhrmc-foundation

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The new pediatric center being built by NHRMC

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A DMD Family:  Once Strangers, Now Friends

This is the DMD family we have grown to love and admire.

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We had just finished his early birthday. Mitch was grateful to have a few of his close friends over to celebrate his life. To my knowledge, none of the boys knew Mitch was dying, they just knew he was sick and we were celebrating his life a little early. If they did know, they kept it a secret so as not to frighten Mitch. Natalie and I carefully revealed his circumstance over time, but we wanted him to be a little boy just a while longer. That was our present to him.

“I will always be real and acknowledge the sad, then look beyond and find a reason to be glad. That is what a dying boy taught his dad.”

— Christopher M. Jones | Mitchell's Journey

At this moment, Mitch still had every reason to be discouraged. He knew his heart was failing and that no matter what, his life would change as he knew it. Despite his fears, he set his troubles aside and found joy in that moment. He knew he was in trouble, but he was just happy to be alive. There was so much joy in his heart that night. No longer tethered by a million beeping machines, Mitch was free … save the PICC line that entered his right arm and pumped medicine directly into his heart.

As I tucked him in that night, Mitch whispered, “Dad, I had the best day today.”   My heart nearly burst with a mixture of grief and gratitude.

Mitch taught me in this moment that there are still reasons to be glad, no matter what is before us. Though my family, darkness gathered around us, we had moments of sheer, almost heavenly joy. We were afraid but glad for the moments we had.

Mitch reminds me of a saying I stumbled into not long ago: “Don’t be so cool you can’t cry. Don’t be so smart you can’t wonder. Don’t’ be so set on your sunny days that you can’t roll with the thunder.” In so many ways, that saying described Mitch.

Now, there are times for joy – and this was one of them. My heart is glad every time I see this image. But sometimes the thunder rolls so hard it breaks us. There are sacred moments of immense suffering – the likes of which those who do not experience it themselves, can simply not imagine. It wouldn’t be long before the smiles and laughter that once graced the walls of our home turned to ash and a river of tears soaked the floor. There was real suffering in our home – and in truth, there remains a measure of suffering today. Grief is the work of a lifetime, and that’s okay.

Though I must continue this hard work of grieving and healing, I will always be real and acknowledge the sad, then look beyond and find a reason to be glad. That is what a dying boy taught his dad.

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A few more thoughts:

One of the defining characteristics of Mitch was his ability to adapt.  Though Mitchell's muscles were weak at this time and he couldn't throw a regular ball for very long, he decided in this moment to play dodge ball with balloons.  Mitch laughed and laughed as he pounced each balloon toward his opponent.

This night, Mitch wasn't sad he wasn't strong like other kids, he was just glad he had any strength at all.

One more thing ... the shirt he was wearing bore the words, "Watch Me Win."  It was given to him as a gift when he returned home from the hospital.  Loving friends in our neighborhood wanted to give him a boost of confidence.  Mitch loved this shirt - both for the design and the message it conveyed.

Though Mitch lost his life, he won the more important fight.  By the very way he lived his life, he won the greater prize.

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Young Mitch sat quietly in the shade of a tree that was probably 100 years old, or more. Spring had arrived and the air carried a hint of warmer days to come. With each passing day, the warm southern breeze chased the snow up the mountain, soon to disappear. Mitch loved all seasons. He loved the warm, the cold, and everything in between. To him, his cup was always overflowing and his gratitude for even the smallest things spilled over me and caused me to be grateful, too. He was my little boy, yet he was my teacher … and I thank heaven for that.

“I see it now. I see what those almost spiritual impressions were trying to tell me.”

— Christopher M. Jones | Mitchell's Journey

So on this spring morning, Mitch sat in the shade of an almost ancient tree away from others, glad to be alive.

Like me, Mitch was content to be alone. He was shy by nature, but that wasn’t why he enjoyed solitude. Instead, he liked aloneness because he was a thinker – and when his environment was quiet, he could think more clearly. As he grew from tiny boy to a young man, he always surprised me by his insights. I have long admired the quote, a derivative from author Walter Scott, “Oh, what a tangled web do parents weave when they think their children are naive.” Before my wife and I had children, I always sensed the truth of this saying – but when we had Mitch, I discovered how true it was. Often, his perceptive nature was camouflaged by his quiet ways.

Watching my boy in the shade was surreal; his t-shirt bearing the emblem of a favorite video game reminded me of his youth, but I also sensed there was a much older soul that dwelled within his body, hiding in plain sight. There were two Mitchell’s before me … the child I could see and the old soul that was slowly revealing himself.

I didn’t know that he only had a few years left. I just sensed time was precious and that I should make moments matter. I had a growing, urgent feeling to gather memories … as if to store them up and prepare for harder times to come. I see it now. I see what those almost spiritual impressions were trying to tell me.

I am glad I listened to those feelings in those younger years. For in times of grief, these tender moments with my son bring my weary heart a measure of peace … and for that I am grateful.

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Little Mitch was tucked in for the night.  We had just celebrated an early birthday, at his request and he was tired and in need of rest.  No sooner had he closed his eyes than Natalie softly kissed him on the cheek, one more time.   Death was coming fast and we had reached a time when we didn’t know if any moment would be our last moment. 

“If I search for meaning first, peace and understanding follow.  If I search for peace without meaning, what I find is fleeting and hollow.”

— Christopher M. Jones | Mitchell's Journey

In the shadow of her kiss was baby Marlie, anxious to cuddle and keep Mitch company as he slept.  Sensing something was wrong, Mitch had become afraid of the dark so he asked his mom to keep the light outside his room on and his door opened a crack.  A little light and his puppy was all he needed.

Though we were going through hell at the time, we also experienced moments of supernal peace.  As death came closer, so did Heaven and unseen angels – bearing up our broken souls.  Several months prior, I could feel the sun setting on Mitchell’s life … and though there was a great sorrow in my heart, there was a certain beauty and peace, too.  A peace that doesn’t come from this place.  It is as real as anything I know – and it tells me there is more to life than my eyes behold.    

In my experience, the search for peace is coupled with the search for meaning.  If I search for meaning first, peace and understanding follow.  If I search for peace without meaning, what I find is fleeting and hollow.