It is nearly impossible to find the right photo that adequately captures what happened today in our small town in Utah and all around the world. Because of each of you, this run was a success. We will share more details in the coming days: how much we raised, the families we're going to be able to help, and some remarkable stories of hope, courage and love. Because this has been a global event, we still have people running all over the planet ... which is really neat to think about. If only Mitchie could have seen this. And though, perhaps in some way, he can see this from a different view point ... I wish he could have seen your love through the eyes of the little boy he once was.
We met some remarkable young boys today with DMD ... and families that are equally amazing. There is so much love in the world. So much hope. So much goodness.
As the dust begins to settle, I just wanted to thank all of you who have participated, donated and run wherever you are. I wanted to thank the amazing volunteers who have made significant sacrifices in time and their own money to help make this run a success. 100% of the proceeds will be going directly to our goals found on Miles for Mitchell: MDA Summer Camp activities, PPMD Scholarships, Ramps, Assist Devices and other forms of help for families in need.
Nothing quite helps a broken heart as to set sorrow aside and serve and love another. At least that's what I've discovered. And though I still carry the weight of grief, when I reach out to love and lift another ... somehow the world feels a little less heavy.
I'll share more about the run in the coming days. We were blessed to have some amazing volunteer photographers help capture the event: thank you Lindasy Ross, Jake Garn and Jace LeRoy for helping to capture the spirit of this event. As I get those photos, I'll be sure to share them with all of you.
Today, the world moved an inch closer to heaven. Thank you!
Mitch sat patiently at the examination table for one of his regular check-up’s at Schriner’s Hospital. Dr. Kerr, his Neurologist and DMD specialist, would soon arrive to monitor the progress of his muscle wasting. Mitch didn't seem to mind the wait; he was a good, good boy. Dr. Kerr was one of the great doctors. You see, good doctors treat the body, great doctors treat the person. Dr. Kerr was (and remains) one of the great ones because she always gave a thoughtful dose of personal care. And what a medicine that is. To know that someone cares wields great healing power; it can steady a troubled heart and even help put it back together again. Like epinephrine can boost human performance, genuine care can give an emotional boost that rallies strength to fight on. Care is a most powerful thing. Perhaps, among other reasons, it’s powerful because, anymore, it’s so rare.
Having worked with little boys with DMD, Dr. Kerr knew just how broken our son was. Beneath the surface of his soft smile and tender countenance, Mitchell’s was body breaking down on a cellular level. Whatever muscle strength he knew that day would soon fade away like a cloud on a summer’s day, never to return again. Though he looked healthy, my little son was fatally broken. The irony with my son’s journey was our little boy with the tenderest of hearts would die from heart failure.
As I captured this photo my heart went out to Mitch. I knew a little about the broken road before his feet because I had read some brutally honest books about DMD, what to expect and the catastrophic nature of progressive muscle wasting. Pained by his future, I searched the world over for a detour, a pit stop, or an alternate route. But there are none. There is only one road for these children and that road leads to certain death.
As a father, I have always tried to pave the way for my children’s future. Despite my efforts, which are often clumsy and weak, I have discovered my wife is a superior parent to me and she often charts the better way with my children. I am grateful to learn from her daily. I take mental notes and try to follow her example. She instinctively knows that the better path is often the inconvenient one. I love and honor her for that.
Yet, no matter how diligently we try to chart the course, sometimes the road ahead is broken. Less often, the road ends abruptly and we see, to our horror, our loved ones tumble into the abyss.
Until the end, Mitch seemed almost normal. He was still walking, though his gait was becoming more pronounced and walking distances shorter. He could still use his arms, though he couldn't pour himself a glass of milk, for even a half gallon had become too heavy. Each day for Mitch was a stretch of road. Some days it was clear and paved, other days were met with tremendous obstacles.
The broken road for our little boy was invisible to most. He just faced day, each broken road, with a smile … grateful for life.
If ever I was tempted to complain about the difficult road before us, Mitch constantly reminded me of the saying, “There once was a man who cried because he had no shoes, until he met the man who had no feet.” Mitch was just glad to have a body. I was often brought to tears whenever he said, long before his heart was in trouble, how grateful he was for life. If his life had a mantra, that was it. Though grief, at times, has me wish for death, Mitch taught me to be grateful for life. And while I may be tempted to be like the man who cried because he has no shoes, I love someone deeply who has no feet.
However broken the road may seem, I am grateful to still be traveling, for there are heavenly sights yet to be seen. One day, on the very edge of that place beyond the hills, on the horizon of that place I cannot see ... I will see a form familiar to me. I will run to him with bare and bleeding feet … to that lovely form so familiar, my son I shall meet
Last September Mitchell’s Aunt Sonya, who had become almost a second mother to him, got married. Up to this point, her personal and professional life was more than coincidence – it was nothing short of providential. I will write of that another day.
Emotions were especially tender this wedding day because a very special boy was absent. Though I was happy to be with family and I loved then so, my heart was quietly searching for the one who was missing. Though my mind knows where he is, my heart will ever search for him. I remember being on the verge of tears the entire day and I felt like the slightest bump or pebble would break the emotional dam holding back a flood of painful emotions. There were times I had to excuse myself to let the tears flow.
As the wedding photos were being taken I noticed Sonya wearing a special gift given to our family by Cathy O’Grady, perhaps one of the most charitable and loving people I have ever met. She had been following our son’s story and felt moved to make some pendants in honor of our fallen son; a gift for which we are forever grateful. Cathy, having been touched by Mitchell’s Journey dedicated the sale of her pendants to the fight against Duchenne Muscular Dystrophy – my son’s killer.
The wedding photographer, knowing our family’s loss and Sonya’s tender relationship with Mitch, took special photos of Sonya and her pendant. While these two photos are not mine, I love them because they remind me to be grateful for the gift givers of the world. When I look at these photos I see many gifts and my heart swells with gratitude.
- I see my son, though a source of deep love and great agony, Mitch was a gift to me.
- I see Sonya, a gift to our family and son from a loving Father who knew we needed and angel, and sent us one.
- I see Cathy O’Grady, once a stranger, now a friend, the most loving of Samaritans.
- I see the hand of my Father, who is gentle and wise … patiently teaching me to open my eyes.
I am grateful.
A few months ago a friend and colleague of mine shared an interview question he heard several years ago. The question goes: “What’s one thing you know for sure?”
On the surface it might sound like a simple contemplation hardly worthy of a moment’s thought. But I have found it fascinating how deeply that question affects people: “What’s one thing you know … for sure?” Every time I've asked someone that question postures become upright, eyes search the air as if to find words and meaning. Suddenly things get real. No matter the person’s background, conversation gets deep and meaningful and thoughts invariably point to man’s search for meaning.
I remember the day of this photo so well. We took our kids to explore some unfamiliar park across the valley. We have a family tradition each summer called “Park Hopping” wherein we pack a meal and explore a park we've never visited. Knowing how easy it is to get entrenched by the routines of life we made a habit of stepping out of our comfort zones and enjoying the thrill of discovery.
On one occasion, when Wyatt was about 4 years old, we found a park we had never before seen and got settled on the grass. As I was playing with and taking photos of my kids I noticed Wyatt with his tiny hands reach into his little backpack and pull out a can of Febreze. He then started squirting a blanket we had just laid on the grass. He wanted to help out and thought Mitch might like the smell. With each squirt the wind would blow its mist in his face to which little Wyatt would quickly try and dodge. We all chuckled as this little boy who was trying to be helpful and domesticated.
I thought to myself how lucky I was to have children of my own. And as much as I love them, they are not mine… they are on loan.
A few years later, on the day of this photo, Mitch was especially affectionate toward his mother and wrapped his arms around her and leaned his head into hers. This was the day I took one of my favorite photo series of Mitch and his mom – which series now hangs in my home on a very special wall. As I browsed my photos that night I stumbled into these images and didn't appreciate until that moment the portraits of love I was lucky to capture. With tears in my eyes I then wrote in my journal “It’s quite possible that it’s altogether impossible to love your child too much.” If I felt strongly about that then, I feel even stronger about it today.
What’s one thing I know for sure? I know that I love my family – and they are more valuable to me than all the treasures of earth.
Just today I knelt by my son’s empty bed and thanked my Father for the gift of my son. I wept tears of sincere gratitude. I asked that He would let my son, who I know is also His son, know how much he means to me and that I miss him. What’s one thing I know for sure? I also know that God lives. I have seen His hand in too many things. There is no longer room for doubt; not because of what I've seen, but because of what I've felt. I know.
Although there’s a tempest of sorrow that storms in my heart, one day it will calm. And when it does I will look across the glassy waters of grief - from a place of understanding and heavenly peace.
I don’t know much about a lot of things - but there are a few things I know … and I know them for sure.