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We sat in the upper level of Shriners Hospital waiting our turn to visit with the orthotics department. From a distance, I saw Ethan and Mitch whispering in the corner of a vast open space designed to let children play. I could tell by the looks on their faces these young boys were conspiring to have fun. A few moments later I saw Ethan sit on a scooter and Mitch started pushing him with his electric chair. They both laughed and laughed as they scurried about the hardwood floor, sometimes at exhilarating speeds.

Along the wall of this open corridor, I saw a chalkboard where a young child wrote, “I’m sad.” I’ll post that photo in another story about suffering. As I read that simple phrase, clearly written by young hands, I began to cry for that mystery child. My heart broke and I wished I could share a portion of my own health and give it to others in need, including my son. I would have given my life to save my son.

“So, when I seem to struggle or get lost and can’t find my way, I stop to catch my breath … then find someone I can serve that day. It doesn’t take much to turn a bad day around – if I can help someone in need and my heart goes from lost, to suddenly found.”

— Christopher M. Jones | Mitchell's Journey

As I turned attention back Mitch and Ethan, my eyes began to dry and my heart was filled with gratitude. Though life can seem cruel at times, I saw evidence of heaven’s hand right before me. My eyes began to see the tender mercy these two boys were to each other. In that moment, I knew that while God wouldn’t remove Mitchell’s hardship, He sent Ethan to help ease the way.

Mitch was about to endure a great inconvenience. Within a few hours, he would have both legs placed in cast for a few weeks. These casts were shaped in such a way to stretch his heel cords – which stretching would help keep him walking a little longer. However, just a few short months from this photo Mitch would go into catastrophic heart failure – and all that we tried to do to keep him healthy would become painfully irrelevant.

Ethan, knowing his younger brother’s options in life were limited, knew just how to serve him. He always allowed Mitch to wrestle him to the ground and let him win, even though Ethan was much stronger than his younger brother. He helped Mitch build blanket forts when his arms were weak. Sometimes Mitch would sit in the middle of the room with a smile as Ethan built a big pillowy, blankety fort around him. Mitchell’s smile would always grow in proportion to the size of the fort. Though life was difficult, it was also glorious.

Ethan found ways to serve Mitch so he could feel like a healthy child. Ironically, by allowing his older brother to serve him, Mitch was serving Ethan at the same time. When I think back on my own life, not once have I served someone and regretted the decision. In fact, I have always felt more blessed than the person I was trying to serve. Heaven’s paradoxes are as sweet as they are beautiful.

So, when I seem to struggle or get lost and can’t find my way, I stop to catch my breath … then find someone I can serve that day. It doesn’t take much to turn a bad day around – if I can help someone in need and my heart goes from lost, to suddenly found.

That’s the flipside of service: by allowing people to serve us, we are also serving them. The very act of giving can change or heal a heart … times ten.

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I remember this cold winter night when Natalie tucked our sweet boy in.  Mitch loved to be tucked away before he slept and the closer his tender little life came to the edge of the abyss, he seemed to want that comfort more and more.  I believe part of him, sensing time was short, was afraid of the night – for what if he didn’t wake?  Mitch didn’t want to die; in fact, he very much wanted to live.  Though his muscles were getting weaker and he was able to do less and less, he wanted to hang on to whatever life he could.  As I mentioned in an earlier post, he wasn’t a glass half empty/full person … he was just glad there was something in it.  For Mitch, even the smallest drop in his cup was cause for gratitude.  Oh that I could be a shadow of him.

“The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped. That is how we hold our broken pieces together. ”

— Christopher M. Jones | Mitchell's Journey

After talking for a while, Natalie reached over to Mitch and they gave each other a warm embrace.  My heart swelled as I saw these two remarkable souls hold each other as if to say to each other, “I’ll hold your broken pieces.”  Natalie fought valiantly to keep Mitchell’s broken body together while his sweet soul seemed to hold her broken heart and keep it as one. 

There was never a night that little Mitch didn’t get this same hug from his mother.  She was his greatest comfort in life and he loved her so.  Though I tried to be there for my son in every way I knew how, there is simply no equal for a mother’s love.

This photo was taken January 12th, just a few days after we learned his heart was collapsing and that therapies were not working.  He was denied a heart transplant because he had a fatal disease and all we had left was precious time.  We didn’t know how much time – we just knew the end was coming.  Natalie and I cried every night under what felt like an ever blackening sky – for hope had faded like the evening sun.  In the darkness, fear of losing him loomed heavy like a thick fog and we didn’t know where to go or what to do.  We just knelt and prayed for help.

Two weeks later Mitch would be admitted to the ER for end-stage heart failure … and though we already felt broken, we were about to be broken further than we could imagine as we watched our boy slowly die.  Then came grief, which broke our brokenness even more.

My greatest heartache in life was then, and remains today, knowing that we couldn’t save him.  That is a grief of another sort … a grief added to his death.  A grief twice.

Since Mitchell’s passing, Natalie and I have learned how to hold each other’s broken pieces together.  It isn’t always easy, especially when we feel like we’re falling apart ourselves – but we find a way to set aside our sorrows and be there for each other … and that is what makes the difference.  The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped.  That is how we hold our broken pieces together.  Mitch was scared, yet he tried to comfort his mom anyway.  In return, he received great spiritual comfort.

I know that Mitch and my Father are holding some of my broken pieces together, pieces unknown to me.  I can sense heaven’s hand in my life – and for that I am grateful.  Though I carry great grief, I also carry gratitude for feelings of peace. 

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Immediately after Mitchell’s diagnosis, he was put on a rigid dose of steroids. For reasons not completely understood by doctors, these steroids are known to keep these young boys ambulatory a little longer. The moment DMD children stop walking, they are introduced to a host of new troubles. So, keeping them on their feet as long as possible is important.

“I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. ”

— Christopher M. Jones | Mitchell's Journey

For the first few weeks I remember watching my sweet wife break into tears as little Mitch would spit the medicine out, not wanting to take them. “How do I help my child do this important thing?” she asked. It wouldn’t take long for tiny Mitch to accept his new reality and that taking medicine was part of life for him. 

I remember this moment so vividly. It was a warm summer morning and our kids were anxious to play in the back yard. Mitch sat on our kitchen counter and looked at his mommy, wanting only to make her happy. Such is the heart of a child. He swallowed a bitter pill with a smile and then dashed off to some childhood adventure. He didn’t know why he needed to do that unpleasant thing – he trusted his parents that it was helping him.

And that is how things went over the next few years. Little Mitch always trusting and obedient, Natalie ever faithful and true to her baby boy. Never have I witnessed a more beautiful relationship than between these two. Mitch wanted only to make his mommy proud, and Natalie wanted only to keep her child healthy and happy. That is the most beautiful yet agonizing thing about parenthood – the moment we have a child our happiness and fulfillment comes in and through our children. If that is how it works for mortals, I can only imagine how it feels to our Father.

Fast-forward a few short years, in what felt like the blink of an eye, I found myself trembling at the knees as my son was dying. Mitch wanted to live and desperately didn’t want to hurt his mother’s feelings. I remember just as vividly that quiet winter night when he clung to life by a tattered thread. I imagine he, at least in spirit, looked toward his mommy in this same way. Eyes filled with love … wanting only to make her happy. Such a vision in my mind breaks me on the inside.

I remember being awoken by an unseen influence. It was as real to me as anything I have ever known in mortality. I was in a deep sleep on the floor beside his bed – exhausted beyond measure – then suddenly I was wide awake. I had a distinct impression I needed to tuck Mitch in. I rose to my feet, then fell to my knees beside him. With one hand holding his and another on his forehead, I leaned in and whispered to Mitch that I was tucking him in, just as he liked it. I told him to not be afraid. I told him I knew he was tired and in need of rest – that he could go and we would be okay. I told my son how proud his mother and I were of him. I told Mitch that he was all we ever hoped he would be, and so much more.

Thirty minutes later, he was gone. I know he heard me. I know it. 

The death of my son has been the most bitter of pills to swallow. I have never known an agony of the soul such as this. Grief is a daily dose of sorrow that is bitter to the taste. Yet grief need not make us bitter, for I believe it has the power to make us better.

Since the passing of my son I have thought often about the bitter pills, we must swallow in life and the bitter cups from which we must sometimes drink. They are awful in the moment. Sometimes they are terrifying. But they are necessary if we are to grow. I have come to learn that bitter pills can be blessings. I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. I have discovered that with heaven’s help, the things which seemed to hurt me actually helped me. 

So, when I have moments of grief … when it seems I am choking on that bitter pill … I will follow my son’s example and trust my Father; I will have faith that my struggles are helping me be something I don’t yet have a mind to see.

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I’ll never forget the look on her face and the sound of her tearful whisper, lips trembling with sorrow, “Honey, how do we do this? I don’t know how to go on.” My heart, at least what was left of it, broke a little more. I whispered, “I don’t know, but we’ll do this together.” 

Our sweet little boy’s body lay silent just a few feet away from us. Almost overnight we found ourselves living a nightmare from which we could not wake … a soul-crushing pain from which we could not escape.

Next to his casket sat Mitchell’s scooter, which once carried his weakening body, now suddenly carried an emptiness that filled the room. I couldn’t imagine grief becoming any worse than it felt that day. I would soon realize that I had scarcely tasted that bitter cup – for the wages of grief were just beginning. Night had not yet fallen.

Moments later, my dear wife and I would walk into the chapel and give the most painful address of our lives. Yes, heaven felt close that day, but I was also in hell.

A few months after Mitch had passed I went to a doctor to examine my elbow, which had experienced some unusual and intense pain. After a short examination he determined I had tennis elbow. Secretly, I was devastated – for something deep inside me was hoping it was something terminal … something to end the deep pain I felt every waking minute of my life.

Although there were times I wished for death, I also knew I needed to be there for my wife and children. I loved them just as much as Mitch, yet, a part of me yearned for death so I could stop hurting. 

I was terrified of going to sleep or waking up – for that transition between wake and sleep often brought the unfiltered horror of losing my child into my mind and heart. Whatever progress I had made was lost in those moments of transition and it was as if I lost my son all over again. And again. And again. And again. Whenever that happened I would find myself in a state of panic and I would run to my son’s room and weep at the foot of his empty bed. I prayed every night that I could fall asleep and wake up quickly – so I would be spared such horrors of the mind and heart. Despite my pleas for relief, I was often not spared – and I spent many sleepless nights staring into the night sky in search of my Father.

Deep was the forest and dark was the grief; I stumbled over pebbles in search of heaven and peace. And when I was tempted to raise my hands and give up, I heard a loving whisper from my Father to instead look up. Surrounded in darkness, tears clouding the sky, I began to see with my spiritual eyes. What I saw is hard to describe … for I discerned a constellation of blessings to which I was previously blind. 

Each blessing, a dim fleck of light, came into view of my spiritual sight. It didn’t matter however great or small, when I recognized these tender mercies something inside me began to arise and stand tall. I was not abandoned in darkness and grief – instead I was tutored to see heaven’s blessings and in them find a measure of peace.