My wife and I spoke to the student body of Riverton High School (in Utah) who has chosen Mitchell’s Journey as the charity they’re going to support this December. Natalie, who doesn’t enjoy public speaking, bravely shared her heart-felt gratitude to these remarkable students for the good they’re about to do. I admire this woman more than she knows. She is stronger than I am. Braver than I could hope to be. Every single day, she makes me a better me.
Speaking to this group of students was humbling. There were two assemblies back-to-back: each time the auditorium was filled to capacity with students anxious to support a good cause. There was a spirit of goodness in that High School; one I will not soon forget. I remember what it was like to be in high school – and I don’t remember anything like what I witnessed. This is a new generation of youth anxious to be about a cause bigger than themselves. They are noble, hungry to help, and filled with compassion.
For the next 18 days these students will sacrifice their time and energy during the holiday season to hold a variety of fundraising activities aimed at helping Mitchell’s Journey. Their student body president, Hannah Kartchner, reminded the students “Remember, it’s not about the money, it’s about the change.” At least to me, her words carried deep and profound meaning. She reminded me of the principle that it isn’t enough to go through the motions, but rather to let those motions go through us and change us from the inside out. This high school is enlightened because they know in the very act of giving they receive. They know that when they give from the heart, their hearts change for the better.
When it was my turn to speak, I felt as though I were already among friends … kindred souls who just want to help. I shared with the students what Duchenne Muscular Dystrophy does to children and its catastrophic outcomes; I then outlined how we plan to support PPMD, MDA and some local families with the money we raise. Finally, I shifted attention to the story of my little boy’s life and death. There were times it was hard to keep my composure. I miss Mitch and sometimes it is difficult to talk about him without getting emotional. He wanted so much to live … yet here I am, very much alive and hurting to have him back in my arms. I vowed the day I lost him, and I vow again today, to make his life and loss matter. I promised my fallen son to not waste another day of my life. Instead I promised to offer my heart and meager talents in the service of others.
Mitchell’s Journey is not only about reflections on the past, it’s about the future, too. To take grief and sorrow and see what good it can do. I don’t know much, but this thing I know: when we enlist serve others our hearts will change and they will surely grow.
I never imagined a day I wouldn’t weep to the point of exhaustion. For two years after my son passed away, I wept like a child in my closet and in my secret places. Sometimes I couldn’t contain myself and I would cry even in public places. But I wept. Every single day, I wept. “Will grief ever end? I am so tired from sorrow. When will relief come?” I thought to myself in moments of deep despair.
I have come to learn an immutable truth: grief will last so long as love lasts. The moment I stop loving will be the moment I stop hurting. But that will never happen – for I love little Mitch, even to infinity. So, I accept that sorrow will be my companion the remainder of my mortal life. There is no escaping it. I will not run from grief … instead I will try to learn from it.
“Somehow, after passing through veils of sorrow and the shadows of death, there is light on the other side.”
So far, grief has taught me to enjoy the moment, for we will never have now again. Grief has turned my life upside down, but right-side up – for my priorities are so very different. It has taught me to love more deeply and witness first-hand the supernal doctrine of mourning with those that mourn. I have experienced the healing powers of empathy from others and seen the destructive effects when there is none. Grief, while hellish and painful, has been a tender teacher – and for that I am grateful.
I have found the process of writing out my sorrows, in my journal and here on Mitchell’s Journey, a helpful tool in my grief journey. I’m sure on some level it has helped release building pressure that might otherwise have become bottled up grief. But I have discovered more in writing that just releasing emotional pressure. It has helped me learn and process the things I hold most dear to my heart. Author Joseph Joubert once observed, “Writing is closer to thinking than speaking.” I believe he is right. Writing down my thoughts has helped me sort through my sorrows, to provide context and meaning to suffering, and to see with my spiritual eyes.
This is what it looks like when I write. A blank sheet of paper and a photo. I never write without asking my Father in prayer, “What am I to learn from this? I’m listening.” From there I go on a journey back in time to these moments I hold sacred and dear to me. My memories are vivid and almost tangible … both a blessing and a curse for a heart that longs to love as it once did. I always cry when I write. Sometimes I weep. On occasion, I weep deeper than deep. But somehow, after passing through veils of sorrow and the shadows of death, there is light on the other side. I hear my Father’s voice, however quietly, and I know we’re not alone. I then thank my Father for teaching me something my weary heart needed to know.
Hearing my loving Father’s voice teach my broken soul, no matter how undeserving I may feel at times, gives me hope that perhaps tomorrow, or someday, things may not be so heavy as they seem today. Already I see a difference from yesterday. And with each step toward healing my hope grows. Even now I look at my tender, yet healing heart and hope grows.
As far as I can remember, every time I've encountered a catastrophe in life I was bewildered by the challenge in front of me. “How can I possibly do this?” I would think to myself, “I’m not capable or prepared.”
When we learned of Mitchell’s diagnosis the road ahead appeared broken and treacherous and seemed to stretch for miles and miles … even to infinity. Those were days that had me struggling to catch my breath and steady my step. One thing I've learned on Mitchell’s Journey is the first mile is always the hardest.
The truth is, we've had many first miles. The day Mitch was diagnosed with DMD was a first mile and the road ahead was obscured by fear and the fog of the unknown. Often, for the first while, I found myself stumbling over … everything. The weight of grief was new to me and I had to learn to adjust to new burdens. Over time, the journey got a little easier. It wasn't that the obstacles were different or burdens removed, but my ability to navigate grew stronger. I have my Father to thank for that – for He has been my tutor in matters of the soul … perfectly kind and infinitely patient. One day I will fall at His feet and thank Him for everything.
At various points along our son’s journey we would encounter new challenges and new first miles. The day we learned Mitchell’s heart was failing was a new first mile, a new challenge. Six months later I would take this photo as we learned therapies weren't working: another first mile. Never had a hallway felt so long. Before we knew it we learned sweet Mitch was experiencing end-stage heart failure … another first mile. Finally, in what seemed in the blink of an eye, my son died and I had to walk the longest, loneliest mile of my life. Heaven felt next door, yet so far away.
Just yesterday I visited Mitch at the cemetery. I wanted to place two solar lights that might shine on his headstone at night. While there I met a woman whose husband died tragically just over a year ago. He is buried just a few plots away from my son. She had 3 beautiful children and a kind demeanor. My heart went out to that family and I grieved for them. My heart went out to those young children who are without a father. I prayed in my heart they would find comfort and peace.
At one point I asked how her grief journey was going and she replied just as I suspected … a mixture of progress and pain. She then told me how others tried to prepare her for the 1 year milestone … that somehow everything would get easier after that. To her disappointment, the one year anniversary passed and nothing changed – grief remained. Her loss and heartache was the same. I identified with her and said I heard the same nonsense from others. I told her I thought what she was feeling was normal and that I felt the same way.
I had the words in my mind, but I didn't think to say them to her; I just said to myself, “The first mile is always the hardest.” As I drove home I began to ponder what the first mile means to me. It isn't measured by time or anniversaries (such a thought is foolishness) … to me the first mile is a metaphor that points to deeply personal journey of grief. It can’t be seen or measured – only felt. Some people seem to run the first mile quickly, others walk, some crawl … but at some point in our journey with grief we make it past the first mile.
How do we know when we've passed the first mile? I’m not sure I know the answer … but at least for me, I think I have passed that threshold because I don’t live in a constant state of grief. Today, I have grief moments, almost daily, but I don’t live in a constant state of grief. Yes, I still weep and long for my son, but like a summer storm, it passes and soon I see the sun.
To be clear, grief is the longest mile I've ever known. Indeed, the journey of grief seems to stretch out to infinity; but I know where that road leads, even to eternity.
Yet, I am still mortal … I see so little, and understand even less. Though I know my son’s soul lives on, the father in me is empty and bereft. Thus, the pain of grief remains. Though my legs are weary and I often stop to catch my breath, this much I know: I've passed the first mile and I hurt a little less.
It was an especially hot summer that year. The desert sun beat down on our skin like an oven set on broil. For some reason, even the shade of summer trees didn't offer much relief. Although we struggled to make ends meet, Natalie and I had just saved up enough money to replace our swamp cooler with an air conditioner. Finally, our family was able to take a break from the summer heat – and we slept much better at night because our small home was comfortably cool. I remember how excited our young kids were to wear their jammies in the summer because our home was no longer hot at night.
On this occasion, Ethan and little Mitch were in the back yard jumping from our plastic jungle gym into an inflatable pool. We seemed to go through at least three inflatable pools each year because the kids were always experimenting with them and they’d invariably pop them with sticks, lawn furniture, rocks and other things. We didn't mind. While we have tried to teach our kids the importance of taking care of things, we tried to balance that with a spirit of adventure and experimentation. Getting a few cheap pools a year was a small price to pay for the memories they made.
The news of Mitchell’s diagnosis was still fresh on our minds and heavy in our hearts. While in a state of shock, we did our best to live life the best we knew how, no matter how scared we were. Looking back, I’m glad we didn't let our fear of the future overtake us – for that would have robbed us of the moment. And those moments are priceless today.
So, I sat in the shade and watched our boys laugh and play. In my mind, I began to wonder how long this pool would last, and I smiled. Little Mitch dove bravely from the jungle gym into the pool head-first. This tiny little guy never flinched at the unknown and was eager to explore the world far beyond his comfort zone. This photo is so … Mitch.
I remember thinking to myself as I took this photo how much I admired his courage and zest for life. I quietly hoped Mitch would demonstrate that same courage in the years to come as his body dove into much deeper, fatal waters. True to form, over the years, Mitch would face his fears courageously. Whether it was his first day at school, MDA summer camp, or the scare of an unfamiliar rollercoaster. That isn't to say he was never afraid. Everyone is afraid of something. Mitch just faced his fears, however scared he felt, and kept moving on. He drank life in the best he knew how – he took all of it, the good and the bad. I always admired that about him and I often found myself following his quiet example, deep in his shadow.
Mitchell’s Journey with DMD has been terrifying. Grief, even more so. Yet, I think it’s safe to say I have found a measure of peace. That doesn't mean I don’t grieve. To the contrary, I grieve deeply … so very deeply. But peace, I have discovered, hasn’t come from the absence of grief and sorrow, but in learning to cope with it. I have found the most effective way to grieve is … to simply grieve. Like Mitch in this photo, when grief comes, I just dive in headfirst. Yes, I'm afraid of grief because it hurts. But, I have found the sooner I accept the sorrow, however painful it feels, I emerge from the deep waters of grief much faster. If I resist it, I may postpone it for a season, but in the end, it catches up to me and I only prolong the hurt.
When I look at this photo I am reminded that courage has nothing to do with physical strength. It’s more a matter of the mind and heart, seeing past the things that might stop us before we even start.
Thank you little Mitch for teaching me, however painfully, to live fearlessly.