A conversation between mother and son… "What is the one thing in life that has most surprised you?" She said, "The brevity of it." #mitchellsjourney#essaysonhope
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It was an especially hot summer day when two mothers and 4 children walked into Pioneer Park, each with an arm full of gifts they were about to give away. Quietly they began placing all manner of toys throughout the playground. Each toy had a sticker attached to it with an invitation to play with and keep, signed Mitchell’s Journey.
Cathy O’Grady, a follower-turned-friend from Boston, was in Salt Lake City and wanted to do something in memory of little Mitch. So, she purchased two carts of toys that included baseball bats, footballs, bubbles, chalk, soccer balls and other things kids used to play with before the advent of technology … before the age of digital isolation and endless distraction.
She was kind enough to let me follow her and a friend, Tracey Langston, so I could take photos of their random act of love and kindness in memory of Mitch. Each of them wore a Miles for Mitchell shirt because they wanted to take my son with them.
“Watch how parents will put their phones down and suddenly start playing with their children when they’re given a toy.” Cathy said. Sure enough, exactly as she described, I saw it with my own eyes. Parents who moments earlier were busy scrolling through never ending streams of Pinterest posts, social feeds, texts, emails and other things suddenly set their devices down and began to play with their children.
I saw adorable little kids stumble into a lonely soccer ball, pick it up with curiosity and then show it to their parents as though they won a lottery. I marveled at how these small, inexpensive toys changed how people interacted with one another. As these anonymous gifts were discovered, the playground went from friendly to an excited frolic.
After these good Samaritans were done placing toys … when parents and children alike were playing with one another, I told Cathy how humbled I was by her act of kindness. As my eyes filled with tears … fighting back a wave of grief … I told Cathy something about little Mitch just before he passed away. As Mitch was facing the realities of his own death he wept and wept as he told me how much he wished he could be like regular kids. My soul unraveled and my heart fell to the floor as I heard my son describe what he wanted to do in “real life” but could not. “Dad, I don’t want to ride a skate board in a video game, I want to do it for reals.” Mitch sobbed in ways only a dying child can know. And my soul writhed.
I told Cathy how grateful I was for the gifts she gave others. She didn’t just give toys, you see. These little gifts were a means to a much greater end. Cathy gave the gift of play. The gift of relationships.
So, on this hot summer day, never a swing set looked so empty, yet felt so full. I wanted my little boy to be seated there and was pained that he was not. I wished with all of my heart I could push him back and forth, long after the sun set. I wanted to play with Mitch and see his face and hear him laugh, yet he was forever gone. Instead, I saw other children and parents enjoy what I no longer had – and yet my heart swelled with gratitude for their happiness.
I am so grateful for people like Cathy and Tracey … who seek to build others up and serve with love. I wonder how the world would change if everyone gave freely and not want anything in exchange. Something divine happens when we love and lift … for the very act of giving is itself a supernal gift.
You can see more photos of this experience at the park on instagram.com/mitchells_journey/
You can also learn more about Cathy and the many other good works she is doing here: http://sofiasangelsfoundation.org/
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Winter was pressing gently on us and the skiffs of snow and crisp air seemed to promise colder, snowier days ahead. With the holidays approaching, Mitch was excited about the season of dad’s famous hot chocolate, sleigh riding, popcorn and movies by the fireplace, Christmas presents and lots of cuddles. The little boy in me was excited, too.
“When I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts?
One is hollow, emptier than empty. The other is rich, filled to infinity.”
I left a busy day of work so I could meet little Mitch at the University of Utah Hospital where he was to meet with Dr. Flanigan, a specialist who is leading some research with neuromuscular disease and DMD.
Just 20 minutes prior to taking this photo I was in the hall of the hospital peeking at Mitch through the door of an examination room that was open a crack. I was pretending to sneak around while a nurse was doing some benchmark tests. Mitch kept trying to hold in his giggles as if we were both going to get busted. I remember when I was a young child trying to prevent a giggle at church or in school … it was always the moments you weren’t supposed to laugh that seemed to make giggling the most intense. Mitch was having one of those moments where he was about to lose himself in laughter. The nurse played along and pretended to be stiff and orderly – but in her heart, she was giggling with us. I was so grateful for medical staff who care for the heart and soul as much as they do the body.
At the end of the doctor’s visit, I kissed my wife and kids and said goodbye. As I started to walk to my own car, Mitch turned around and smiled as I said “I wuv you Mitchie!” My heart was overflowing then and it overflows today when I look at this photo and see his smiling face.
I don’t remember the substance of the business meetings I had that day, but I can tell you the meaning of these moments and what happened with my son. I remember what happened because that’s what matters most to me and I chose to be in the moment. If I wasn’t careful, I could have shown up at the hospital but never really arrived. I know how easy it is to be distracted and disconnected from what is in front of us. From the digital devices that entice us away to preoccupations of work or hobby … or perhaps simply stress; it is easy to be somewhere but nowhere.
I have discovered the true present of being present. Not only did being fully engaged with my son mean a lot to him then, reflecting back on this moment now is a gift of comfort to my weary heart. It is a reminder to me, when I’m tempted to doubt myself, that perhaps once in a while I got something right. It motivates me to keep getting things right. I miss the mark more often than I want to … but I keep trying.
Just the other day I was visiting with my mother about life. I asked her, “What is the one thing in life that has most surprised you?” She said, “The brevity of it.” I immediately felt the truth of her words. Life is brief … and moments are briefer, still. How easy it is to be swept away in the thick of thin things and be robbed of life’s greatest gifts. This photo is a symbol of the present of being present.
So, when I think back on this cold winter day, while we were carefully wrapping presents we'd soon give away … I realized that very moment the greatest gift we can give one another is time and attention: love from mom and dad, sister and brother. It’s never toys and things our kids are really after … but love, acceptance, guidance and laughter. Those are gifts of greatest import … for life, after all, is exceedingly short. And when I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts?
One is hollow, emptier than empty. The other is rich, filled to infinity.
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As many of our followers know, we had a fundraiser earlier this spring which enabled #mitchellsjourneyto help other families affected by muscular dystrophy, as well as support programs that help kids and parents alike. Among the program's we have sponsored, we donated $2,000 to MDA to sponsor a fishing and swimming excursion at this year's summer camp.
Mitchell loved swimming and fishing, so sponsoring these activities was a perfect opportunity to help boys in memory of our own. These fishing and swimming programs spread over the two week camp for both young and old DMD participants.
IMAGE ON LEFT
As I was taking photos Natalie pointed to this young boy fishing. He reminded us of little Mitch in so many ways. From the way he spoke out loud (to himself), to his facial expressions, we saw our little son. My heart broke and melted all at the same time.
IMAGE AT CENTER
These are just a few of the young children that got to participate in the swimming program. Nothing was so rewarding as to see these young children who struggle to walk and play like regular children suddenly enjoy a sense of weightlessness and freedom by playing in the water. I think that is one of the many reasons Mitchell loved to swim.
IMAGE ON RIGHT
This was my sweet wife sitting by the pool watching the children play. Though she wanted her little son there, it brought her some comfort to help other children enjoy activities our son could not.
Thank you to everyone that supported our Miles for Mitchell run earlier this year. Thanks to you, because of your support, we've been blessed with opportunities to serve other families that struggle. We'll post those stories soon.
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