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This was Mitchell’s first morning after being released from the hospital to die at home. Though in the comfort of my own home and bed, I didn't sleep well that night – I wept and I prayed for my son to be delivered from the jaws of death. If ever there were a time for hope, this was it.

As I walked into my son’s bedroom I couldn't help but notice how the morning sun shone softly through his window and warmed the color of everything … as if to promise that not all of life is dark and there is cause for hope. 

“For if we, being human, can love our children so intensely, how much more might He love us? I can scarcely imagine. I can scarcely take it in.”

— Christopher M. Jones | Mitchell's Journey

I asked Mitch how he slept and he said in a soft voice “I slept great, Dad.” He was home – and that is where he loved to be. Until this moment I had never considered it possible to be in both heaven and hell at the same time. Yet there I was, in the middle of both… a beautiful agony.

Mitch was tired and weak so I helped him sit up while Marlie was still in his arms. She looked at him for a moment and then gave him a soft kiss. Mitch smiled and hugged his puppy close to his face. He loved having his own baby dog. Marlie had a mission of mercy to perform and for whatever reason she seemed to forget she was a puppy whenever she was near Mitch. This little dog that was no more than 3 months old gave my son much comfort. 

I’ll never forget, despite my profound sorrow, the feelings of hope and peace I felt this day – and many days thereafter. Reflecting back on our time with my son on hospice I have come to understand those moments of peace weren't a promise of deliverance from hardship, but a faint whisper … a spiritual glimpse that all was as it was meant to be and that there were greater forces at work than I knew. So I learned to put faith in that.

I learned early in my life it is not reasonable to hope for a life free of hardship and sorrow. I cannot hope to be the only human exception, exempt from the sorrows of this life. But I can hope the tempest of sorrow and grief in my heart will one day calm. I can hope to find meaning, to search for understanding and experience growth. Those things are eternal and the things for which we can truly hope.

I also hope to see my son again one day. When I do, I will run at reckless speeds to hug him. I will wet his face and his neck with my tears and I will tell him how much I love him. And perhaps, when I turn around I might see the Father of my soul do the same to me. 

I hope. 

For if we, being human, can love our children so intensely, how much more might He love us? I can scarcely imagine. I can scarcely take it in.

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The morning after Mitchell was released from the hospital he wanted to play Minecraft. His hands, finally free of bandages, medical tape and IVs were able to do the things he loved. It felt like a dream state … my sweet son was home. My cup was full, and running over.

Eager to spend every waking moment with Mitch I sat with him and his friend Luke while the three of us, on separate computers, began to play in his digital sandbox. 

Within about 20 minutes Mitch had carved out a fascinating labyrinth of halls, rooms and secret passages nestled deep in a mountainside. He had Luke and me building out rooms deep beneath the surface of the earth. I wanted to do a good job for him so I carefully carved out a mansion … I laid carpet, installed an indoor swimming pool, hung lights and more. I wanted to make a digital fort for my son that would be the dream of any boy. After a while I realized Mitch and Luke were no longer near me and for a moment I felt like a child accidentally left behind at the mall. The boy in me panicked because I wanted to be near my loved one. I searched for Mitch and couldn't find him and then realized he had gone to the surface with Luke to build something interesting.

I took a photo the moment I discovered what he had done.

Mitch and his friend created a large waterside that went down the side of a mountain (see left image). He then placed a raft at the top and rode down the artificial river as if it were a theme park attraction. Each time he would say aloud “Weeeeeeeee!” Mitchell had so much fun. I had even more fun watching him. My heart was full.

This was the last time Mitch played Minecraft on a computer. The rest of his gaming adventures would happen on an X-Box or his iPod. We were grateful that Mitch was able to play video games until the end. These games played a vital role in keeping his mind active, filled occasional voids and offered moments of escape while his body progressively shut down. 

Today I roam his carefully crafted landscapes as if they were ancient Aztec ruins. I see the castles and fortresses he built with great care – each an expression of his creativity and mindset. It is haunting on some level because I often expect to see his avatar appear, like it did when we played together. But he is not there and never will be – at least the way he used to be. 

These vast digital landscapes that contain my son’s creations are like modern-day archaeological finds. I have scarcely scratched the surface. There are courtyards, forts, secret caves, cities in the trees my son has created that have yet to be explored. Like an archaeologist that studies ancient ruins … searching for clues of a people long gone, I will search these maps out and discover breadcrumbs my son left behind. And I will wonder.

Technology presents a new and complex dimension to mourning. There are more than drawers, backpacks and closets to explore; there are now enormous digital places that consume no physical space. And unless we look carefully we may miss out on the digital breadcrumbs our loved ones leave behind.

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I knew the Nerf battle was going to be short when Mitch closed his eyes, leaned toward the wall and put his frail hand out to keep from losing his balance. The war game Mitch organized had just started and my son asked to wear my paintball mask as part of his costume. Knowing his oxygen was low and breaths shallow I only let him put it on the moment we started and told him he could wear it for 30 seconds. The moment I saw Mitch close his eyes I took his mask off, kissed his forehead and whispered “Son, you are the strongest warrior I have ever known.” He whispered to me, “Dad, can I still play?” I told him he could and he smiled softly. Mitch hardly had the strength to lift his Nerf gun. Within a minute of that short exchange it was clear Mitch couldn't stand. The battle was over in less than two minutes. 

Natalie scooped Mitch in her arms and whispered to him, “I love you” and carried him back to his room. The next morning Mitch would tell us in a slurry voice, “I don’t think I can survive.” My wife and I quietly wept tears from the deepest well of the soul. My son never left his room alive.

Within a few days of my son’s passing I received a private message from a military officer who wrote: “I've seen a lot of things in the past 54 months I've spent in Afghanistan as a Special Forces Green Beret, but nothing could have ever prepared me for what [I've seen on Mitchell’s Journey].” I wish Mitch could have seen what this military officer [and so many other uniformed officers] wrote about him. Mitch never thought himself as strong – but in things that mattered most, he was strongest. My son was so much stronger than me.

A board member of a company I run occasionally sent care packages to Mitch to let my son know he cared. Each time a box arrived it was addressed to “Man of Valor.” I couldn't help but get emotional each time I saw that. As I would bring each package to Mitch I would show him the label and describe what valor meant. Mitch would listen carefully to my words but I could tell he was confused why someone would say that about him. My son thought himself as ordinary, which made him all the more extraordinary. 

Mitchell fought an implacable, mortal enemy – and though he died, he won the greater battle. My son, this two minute warrior, this little man of valor who fought bravely to live and love to the very end is my hero. The battlefield upon which we fought to keep Mitch alive is empty now and I can still hear the haunting echo of my son’s voice. 

I thought death was hard, but I've come to learn grief is infinitely harder. But each day we are learning to rebuild our lives amid the rubble of broken hopes and dreams. 

And so it goes, as one battle ends another begins … each day a battle of the heart, mind and soul in search of inner peace. I have discovered that inner peace is no trivial thing. Nations, civilizations, corporations, families and people are built or destroyed, sustained or compromised, by their relationship to inner peace. 

Today I find myself on the battlefield of grief learning to fight an invisible war of loss and sorrow. My heart still trembles and soul shakes over the death of my son because he was so dear to me and I miss him greatly. 

As I fight this battle of grief I have found inner peace because long ago I understood my core values, my priorities were clear, and I lived what I valued. I gave my son and family, who are most important to me, all that I knew to give. I didn't do it perfectly and I fall short daily – but I have never stopped trying or doing … and because of that I have found new armor, the armor of inner peace.

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It was difficult to get Mitch to eat. His appetite took a significant dive mid-December and with few exceptions it never really returned. His perfusion was so poor that, even if he felt like eating, his digestive system couldn't handle much of anything. Toward the end my son would throw up whenever he ate. That was so hard to see. His body, already weak and frail, struggled to recover after each violent episode. 

Natalie had prepared some soup for Mitch and I asked if he wanted to eat in bed. This time he wanted to walk to the kitchen so I held my sons hand as we carefully made our way. He was tired but determined to be independent as long as possible. I love him. Mitch arched his back as he walked to keep his balance because DMD had already stripped his strength away. He was getting so frail and his interaction with the world increasingly brittle.

Ever since he was a tiny little boy we had a very special manner in which Mitch and I held hands. As I softly held his hand escorting him to the kitchen, he moved his hand to hold mine in our special way. The lump in my throat, which never seemed to leave, began to grow. I smiled softly at him and put on a brave face but inside I was falling apart.

Mitch didn't get sick this day – for which I was grateful.

As I looked at my little boy I couldn't help but see something else. I saw my brother. I didn't see someone who looked like one of my brothers, I saw a little boy who was my brother. Toward the end I saw in Mitch things that startled me … I will write of those another time. 

I have spent much of my life contemplating the age of a soul. How old are we really? No one really knows, I suppose … at least not here. But when I am quiet and thoughtful I get a sense we are older than we know. And when I think of my son, my brother, I get the recurring impression I am Mitchell’s younger brother and that he was teaching me.