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A little over a month ago Natalie and I were invited to Zermatt (Utah) to be given the President’s Volunteer Award, which was awarded to us in 2016, under the Obama Administration.

“... when we lose ourselves in the service of others, grief shrinks and we somehow find ourselves … a slightly better version than the one before.”

— Christopher M. Jones | Mitchell's Journey

The award is meant to recognize people who make meaningful contributions to the betterment of society through various forms of service.

Lindsay Hadley (the woman on the right of this photo) and Philip Webb (the man on the left) are both more deserving of such an award. They do so much to help others, with no thought of what they’d get in return. They are the epitome of goodness and abundance. In fact, they have both played a special role in helping Mitchell’s Journey grow and develop.

They are both involved in an organization called Thankful™, which is a non-profit focused on helping make the world a happier place by recognizing and celebrating everyday Thankful moments. I love everything about that organization’s philosophy and efforts. I am grateful (Thankful) they took note of what we’re trying to do at Mitchell’s Journey.

So, we were humbled to be recognized for a brief moment that day – but we knew there was still work to do and people to help. This now hangs on our wall with glad hearts – and we’ve since rolled up our sleeves and got back to work.

I miss my son a great deal. I know Natalie does, too. Though we cannot surgically remove grief, like a tumor to the soul, I have learned we can treat it with gratitude and serve to others. It is my observation that when we lose ourselves in the service of others, grief shrinks and we somehow find ourselves … a slightly better version than the one before.

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This was the night before Mitch slipped into end-stage heart failure. His heart was already failing, we just didn't know it at the time. But this was our last night of normal.

Young Mitch was so tender. So frail.

“I believe one day when this life is over our eyes will be truly opened and we will see mothers in all their majesty and greatness. Men will have been a small player on a much grander stage. ”

— Christopher M. Jones | Mitchell's Journey

“Hey Mitchie, it’s time to go to bed,” Natalie said softly. “Mom, will you help me off the floor? I don’t know what’s happening, but I can’t do it by myself anymore,” Mitch said with an even softer tone. Natalie reached down and scooped up our son with love and tenderness. She knew Mitch wanted to be independent, so she helped him to his feet, then he slowly walked to the bottom of the stairs. Then, he turned to his mother again as she lifted him once more and ascended the stairs.

I overheard Mitch say, “I love you, Mom,” as she carried him up the stairs. My heart swelled for a moment, then I sensed something terrible was about to happen, and my heart fell to the floor and I scrambled to catch my breath.

Soon little Mitch would drift off into that place of dreams. Each night, I knelt at my son’s bed and prayed to my Father that Mitchell’s dreams would be sweet. I prayed for his health and well-being. I prayed that I could somehow take that bitter cup and suffer for him – so I might spare my little boy such hardship.

It was something of a bitter irony that at the moment of this photo we prayed for Mitchell’s health, then a week later we found ourselves frantically praying for more time. Soon our prayers changed again, and as death drew near, we prayed for a gentle, yet quick death. We desperately didn’t want Mitch to suffer - and we knew so much could go so wrong. We were terrified … and we soaked our pillows with tears.

The night Mitch passed away, Natalie wept over our son’s body for hours. She has since shared with me on several occasions the tender and sacred impressions she received that night. Though Natalie was in deep agony, she also felt moments of Mitchell’s tender presence. She wasn’t looking for it – instead, those impressions came distinctly and unexpectedly. During those sacred moments, she felt Mitchell’s soul was allowed to linger and that her soul was touched by little Mitch who was about to travel to that place beyond the hills, that place we cannot see. It was almost as if he said, “I’m okay mommy.” Natalie was overwhelmed with an impression (different than a feeling) that Mitch had a particular purpose on this earth, and though painful to carry the weight of sorrow, she suddenly felt profoundly honored to be Mitchell’s mother. When she shared that with me, I nearly fell to my knees and wept. In that moment, I was reminded of the sacred relationship mothers have with their children – and that I was merely a small part, perhaps even a spectator, of a much greater plan.

The work of motherhood, I’ve observed, is quite different than that of a father. I’m not talking about sharing household duties, shuttling kids from one place to the next, or helping them with homework; I’m talking about the sacred and spiritual bond a mother has with her child. It is a relationship unmatched in all the universe – and I stand in reverence of it.

I think Kate Bush said it best in her song, “This Woman’s Work”:

I stand outside this woman's work

This woman's world

Ooh, it's hard on the man

Now his part is over

Now starts the craft of the Father

I believe one day when this life is over our eyes will be truly opened and we will see mothers in all their majesty and greatness. Men will have been a small player on a much grander stage. We will discover the greatest work that will ever be done in this life is raising children – and none compare to influence of mothers. Therein we see the craft of our Father.

When I think back on this tender evening, the night before we learned time was running out, I see a mother’s burden, and I also see her greatest blessing.

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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.   

“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.”

— Unknown

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.

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Mitch loved floating in water - for it gave his tired body a break from the burdens of gravity.

When he was a toddler, tiny Mitch would cause lifeguards to panic because he dove under the water, held his baby breath, and swam like a little fish for long periods of time. None of the other kids his size did anything like unto him, and because he behaved so irregularly, they often worried he was drowning. As Mitch grew older, he didn't have the muscle strength to swim like he used to, so he would go to the deep end and sink as far as he could. On this occasion, I captured his expression while under the surface. It was then and remains today, a magical thing to see.

We could always tell how long Mitch had been swimming by observing the redness of his eyes. On one occasion after seeing his eyes were especially red, I encouraged him to close his eyes in the pool and Mitch looked me square in the eyes and said, "But dad, I want to see what goes in in the deep. What if I miss something cool?" I giggled and kissed his tender forehead.

I am grateful my son taught me to swim in the deep, open my eyes, and learn to look under the surface of things. It often isn't easy, and sometimes, like Mitch, my eyes also sting ... but, I've learned, it is only under the surface we learn the important things.