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“Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.”

— Christopher M. Jones | Mitchell's Journey

We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs. 

Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.

He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life." 

I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.

I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong. nWhatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.

He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see see will come from the light within.

Gratitude not strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.
 

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“This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. ”

— Christopher M. Jones | Mitchell's Journey

I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”

I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries. 

When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.

Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.

There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013) 

In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot. 

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. 

In time, I will see.

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“Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.”

— Christopher M. Jones | Mitchell's Journey

I don’t have many photos of Mitch with me – which makes the precious few I have all the more special. Most of them aren’t in focus – but I don’t care. I’ll take anything I can get. 

Whenever he was close to me, Mitch would lean his head into my arm, shoulder or chest as if to cuddle any way he could. I know he felt comfort around me – but I don’t think my son had any idea the comfort I found in him. I still long for that comfort.

By the time this photo was taken, we were informed Mitch had days to live. I was so sad about losing my son that I cried everywhere but in front of him. My eyes always seemed to sting, as if I were swimming in chlorine. Every waking moment, my chest felt like it was covered in a lead blanket, my lungs felt shallow and breathing seemed vaguely sharp and painful – for the hours-upon-hours of weeping took its toll on my weary body. Sleeping was impossible. And when I finally found sleep, I wasn't sleeping; I was just passing out. 

I remember teaching little Mitch how to walk as a toddler. It was hard for him because his legs were already weak – but he would hold my fingers with his baby hands and he gave it all he had. I remember listening to his tender voice as he read children’s books to his sweet mother. He tried so hard to be a good student. With vivid detail, I remember watching his chubby little hands grip crayons and work so carefully to color within the lines. As he grew a little older, we tried to teach him that one’s beliefs don’t make them a good person, but their behavior does. Mitch embraced that philosophy. Before he died, we asked him what advice he would give the world. He said this exact phrase, “Be nice to each other and be glad you’re alive. Nothing else matters.” In a tender moment, this small child became a giant; the student became the teacher. I will spend the rest of my life trying to live up to those tender words from a little boy who did just that.

We spent almost 11 years trying to teach our son how to live. Suddenly, we had to teach our son how to die. Nobody ever taught us how to do that and we were terrified beyond measure. As this little boy came to know his fate, the real giant emerged. Though small in stature, he was towering in spirit. 

I have seen a lot of material over the last few years about grief, death, and healing. Some say death is nothing at all – as if to suggest we needn’t trouble ourselves with sorrow over the death of a loved one. Others say our child is just around the corner, as though we might suddenly find peace in such a notion. 

The loss of a child isn’t nothing. To the contrary, it is everything. What’s more, around what corner can I walk? What room can I enter to see my child and hold his hand once more? There is no such room, no such visiting hours. Though I have had spiritual experiences that show me my son still lives and that there is life after life, I still miss my son. I miss the way I used to have him. I miss his voice and his tender ways. I miss the ordinary days. 

Though I understand what those writers were trying to say, I believe some of that prose can cause the sufferer, especially those new to grief and even those who have suffered long with grief, to wonder if something is wrong with them; that because they still hurt, perhaps they’re not grieving right. 

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.

Grief is a long, long road. As far as I can tell, I will live with grief the remainder of my days. Through that sorrow, I am learning Heaven’s strange and mysterious ways. And with each tender lesson from my Father, I am beginning to make peace with my pain. I accept that somewhere deep inside me, there will always be a little rain. That is making peace with pain.

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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.