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“Mitchell’s Journey isn’t only about what happened to my son, but what is now happening because of him. ”

— Christopher M. Jones | Mitchell's Journey

Over the last 3 years, I’ve written much on grief because that was my overwhelming reality. I have discovered that, when it comes to the death of a child (which is different than any death I’ve ever experienced), you don’t get over grief … you don’t move past it … you just learn to live with it. You learn to live with chronic pain. Because of that reality, I will still write of grief and my personal journey of healing – but I have much more to say than my personal songs of sorrow.

Mitchell’s Journey isn’t only about what happened to my son, but what is now happening because of him. So, not only will I write more stories of his life and struggle, I’m going to expand my musings by writing more about peace, family and all of the good things in life; a kind of potpourri of perspectives that have come because of little Mitch. Some stories will be funny, others will be filled with textures of peace and love.

Today I feel an overwhelming sense of peace and gratitude, and I have my Father to thank for that. When I look at this photo of Mitch, one warm summer day, I feel a deep sense of joy because he was happy. 

This journey has been the hardest experience of my life, but also the most fulfilling. If I had my way in life, being human, I would have avoided pain at all cost. After all, I am human. Yet, in avoiding everything that hurts, I would have ignored the part of me you cannot see … the thing that makes me, me. For comfort, I would have forfeit the opportunity to struggle and grow. That is something my Father knows. I have learned that because of my pain, I have changed. And I think that change is good. 

I am grateful to be happy. I am grateful to be human. I am grateful for this little boy, no matter the cost.
 

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“Of grief and healing, I have much to say. Despite the heartache and deep dismay, I’ve discovered portions of peace aren’t so far away. ”

— Christopher M. Jones | Mitchells Journey

Tiny Mitch was seated at our old kitchen table about to celebrate his second birthday. He was a gentle child who had a loving and tender disposition about him. I always felt like Heaven loaned us something special when it came to Mitch. I know that all of our children are special, truly special, but there was something unique about this little boy and I couldn’t put my finger on it.

Natalie made cupcakes which our kids and some cousins decorated. Ethan had cheated and already stuffed a cupcake in his mouth, as evidenced by the crumbs on his face. He was a turkey, but we loved him so. Laura-Ashley stood by her baby brother with her eyes set on the cupcake she wanted. The cousins stood transfixed over the mouth party that was about to take place. Oh, to be a child again …

Mitch curled his tiny fingers as Natalie slowly lit each candle. As I took this photo I received that same impression I had on the day of his birth … that something was wrong with my son. I wondered to myself, “Who are you little Mitch? What is happening with you? What are you meant to do?” I couldn’t see into the future; I only sensed a storm was brooding over the horizon and my soul shuddered. 

After the candles were lit, tiny Mitch attempted to blow the candles. After a few attempts, the candles were out and the kids were enjoying their sugary treats. My memories of this evening are vivid and I can’t help but think how grateful I am that the time spent investing in our children pays dividends for a lifetime. I am glad I wasn’t too busy to be a dad. I know I’ve got a lot to improve on – but I got this day right.

Later that night I rocked tiny Mitch in my arms. As he lay softly in my embrace, he would reach up to touch my face with one hand as he held his sippy cup in the other. I would sing songs to him, tell him fantastical stories, and say him I loved him repeatedly. Soon, my baby drifted off to that place of magic and dreams – and the little boy in me wished I could follow him to Neverland. In that moment, never a child seemed so at peace. Never a father just the same. I held him a little longer, not wanting that heavenly moment to end, grateful for the gift of parenthood. There was nothing in the world I wanted more than what I held in my arms in that moment. As I tucked him in, Natalie, the sweetest mother I have ever known, kissed his face ever so gently. 

I remember kneeling at the edge of my bed that night, long after everyone was asleep, thanking God for the gift of family. I was deeply flawed and felt inadequate as a husband and father, yet I was given the greatest gift in all of humanity: family. 

A year later we would learn Mitch had DMD and that he would likely die in his late teens or early twenties. We were told his muscles would soon atrophy and he would stop walking before he was a teenager. Not long after, he wouldn’t be able to lift his arms or turn over in his bed. His sweet little body would get weaker and weaker until he wouldn’t be able to breathe on his own. Eventually, his heart, also a muscle, would succumb. Death was certain, but when was not.

It was at this same table I wept while reading medical texts that described the horror show I would soon witness. Not only did it detail what DMD does to the body, but what it does to the family. We were told by many that most marriages don’t survive … that this would not only break our hearts but most likely break our family. So, as if one were to brace for a tidal wave, Natalie and I clung to each other and promised to never let each other go.

It was at this table, in the still of night, I knelt in prayer begging my Father for a way out. My son would not be spared. In fact, because of early heart failure, he would die much sooner than anyone imagined. Exactly the opposite of my heart’s desire. Just because I didn’t get want I wanted, doesn’t mean Heaven doesn’t care. In fact, I recognize tender mercies that show me He is here, there and everywhere. Most importantly, I see evidence that He cares.

Mitch had an impression similar to the one I had about him, another tender mercy. When he came home from the hospital, not knowing he was going to die, he said, “Mom, my birthday feels so far away. Can I have an early birthday?” It was unlike him to ask for any such thing – and we knew that he sensed change was happening. Mitch had an early birthday – which was a gift to our son and our family. He was just as tender that day as he was in this photo.

Tomorrow is my son’s birthday; he would have turned 14 years old. It’s been 3 years since he left our family and I wish I could say grief was a thing of the past … but it is not. As long as I’m mortal, deep grief will last. Grief is a struggle; sometimes peace seems so far away. That is until I recognize healing is a process, not a destination, and I can nurture it each day. 

Of grief and healing, I have much to say. Despite the heartache and deep dismay, I've discovered portions of peace aren’t so far away. 

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“So when I’m discouraged, empty handed and with nothing to show, I can hear the loving words of my Father, ‘Be patient, my child, you will grow; take care of your soul and soon it will show.’”

— Christopher M. Jones | Mitchell's Journey

I pulled up to the cemetery one summer evening only to find my sweet wife sitting by our son with a look of heaviness on her countenance. Grief had washed over her and my soul ached that I couldn’t take it away. I, too, was suffering a father’s grief and wondered if the pain would ever end. As far as I could tell, hell was my new home and there was no escaping it.

I could tell my wife was having a sacred moment, so I sat in my car from a distance and gave her space. I have learned that in matters of grief, allowing our loved ones to grieve in their own way and in their own time is key. As I waited patiently, I had a prayer in my heart that her burdens would seem light. Though I was being crushed under the weight of grief myself, I prayed that I might find a way to carry her burdens so that she might find a little rest.

When her moment passed, she motioned for me to join her and we spent some time talking about how we were each holding up. For every day, every hour was a battle to survive. We sat on the warm grass and wept together and longed to have our little boy with us again. The journey of grief seemed like a broken road that stretched out to infinity. Infinity never felt so long. Never felt so lonely.

I recently heard a friend of mine give an address where he described the unique phenomenon of how Chinese Bamboo Trees grow. After being planted, the seed won’t break the soil for 4 years. It silently lies in wait under the surface and seems to do nothing at all. Yet, in order for it to grow, one must water and care for it every day during those first 4 years – even though there is no visible sign of growth whatsoever. Then suddenly, in the 5th year, seemingly out of the blue, something astonishing happens: the Chinese bamboo tree can grow almost a hundred feet in a month and a half. As my friend shared that fascinating fact, I immediately saw a connection to grief and growth.

At least for me, my first 3 years felt like a constant state of sorrow with no sign of relief. Each day I patiently watered the soil of my soul with prayer, meditation, study and a lot of writing … for writing had become my therapy. It has been said that “Writing is closer to thinking than speaking.” So, when I say writing, I don’t mean simply pouring out my hurt on a page … instead, when I wrote, I tried to think, analyze and process what was happening to me. I determined what meaning my sorrows would have in my life. I didn’t ask, “Why Mitch?” or “Why me?”… instead, I asked, “What am I to learn from this?”

I have discovered that growth through grief is just like the Chinese Bamboo Tree. It takes constant care and feeding long before any visible growth occurs. To the sufferer and the observer, feelings of discouragement and depression can surface because there may seem to be no signs of hope. But I have learned from personal experience that if we’re patient, and if we care for the soil of our souls, we can eventually see growth and better days ahead. 

So when I’m discouraged, empty handed and with nothing to show, I can hear the loving words of my Father, “Be patient, my child, you will grow; take care of your soul and soon it will show.”

I will always grieve the loss of my son. Despite my grief, I can still grow. I don’t know much, but this thing I know.

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There is no single photo that encapsulates what happened today at our Miles for Mitchell run. We were humbled by everyone's support and loving encouragement. Though we run in honor of Mitch, we also run in hope for other boys with DMD. Today we had 11 children, each with DMD, attend. Each child left knowing they were loved by a growing community who cares and wants to help.

In this photo, Natalie talks with a dear friend of hers who also has a son with DMD. Our little Mitchell was friends with her son, who is also named Mitchell. Two DMD mothers who love their sons and carry uniquely heavy burdens, yet they set their sorrows aside to love and support each other. 

As I attended the funeral of my beautiful Aunt earlier this week, a woman who loved little Mitch and was there to support him during special times in his life, I discovered that she often said of life, "We're just walking each other home." 

May we walk each other home with helping hands and loving hearts.

Thank you to everyone who supported our event. It was a beautiful day.