Last weekend, during the Miles for Mitchell 5K, I began to think about the kaleidoscope of winning. Real winning has so many unique forms, shapes, and colors and it is all beautiful.
Here are two photos that show 3 ways to win. Wyatt running in honor of his fallen brother … not a day goes by that Wyatt doesn't weep over the loss of Mitch; he would have done anything to save him. Luke, ever the faithful companion to Mitch, encourages Wyatt to press forward when his legs were tired. Lastly, a volunteer scout sitting in the shade of Mitchell’s balloons weeping over the loss of a friend.
Three forms of humanity. Three forms of winning.
To win is to try.
To win is to help others along the way.
To win is to have compassion and love deeply.
These young boys were living life unrehearsed, and living it beautifully. Each of them won.
Last summer we took our kids to the local High School to support a school fundraising event. The energy was almost electric as kids were running around and laughing - it felt all too familiar to my own childhood experience not many years ago.
My older kids quickly disappeared into the crowd with their friends leaving Mitch and I behind. All around us were physically capable people running, jumping and doing things with their bodies Mitch wished so badly he could do. He pointed to some boys running around the track at cheetah speed and said, “Dad, I wish I could do that.” I kissed his face and told him that one day he wouldn't have Muscular Dystrophy … that one day his body would be made whole; but for now, we needed to be patient. He squeezed my hand, smiled softly and we carried on. I’m not sure I made him feel any better … I’d like to think I did … but I could tell he was chewing my words.
As we crossed the track I took this photo and posted it on Instagram with the caption “Races are Relative”. I showed Mitch the photo and told him what I thought “races are relative” meant … that the only person he needs to compete with was the person he was yesterday. Everybody else is irrelevant. I also told him that his physical skills or material talents were far less important than the kind of person he was. I took that moment to reinforce what I have long taught all my kids: the most important thing you’ll ever do in this life is to be good to people.
It wasn't long before Mitchell’s older brother and cousin came back to get him and together they took turns pushing Mitch in his wheelchair around the track at full-sprint. Mitch smiled and laughed and had so much fun feeling the air rush through his hair and on his face. It was awesome. Mitchell’s smile warmed my heart and soul.
This weekend there will be a run and fundraiser in honor of Mitch and to support my family’s mission to fight DMD. While someone will inevitably cross the finish line first tomorrow morning, being first isn't the point of the 5K. In fact, it seems that tomorrow’s run is (and any run like it) is symbolic of the purpose of life, really. The point of it all isn't to best others, but to better ourselves – and I’m convinced we do this best by loving and serving each other.
It wasn't long ago Mitch attended a Special Olympics/Activity Day hosted by our school district. He was nervous because he knew his limitations and was afraid of being asked to do things that might accidentally hurt him. We assured him that was not the case and he agreed to go.
There was every manner of person and medical condition at that event – some were crippled, others nearly decimated by physical deformity. During one race, one of the most medically complex children finally crossed the finish line lying on her back in her electronic wheelchair, long after everyone else. This young child was met with tears, gratitude and loving pride by her family, supporters and volunteers. She smiled and jolted with excitement. Mitch and I watched this beautiful soul who was so glad to simply participate. She wasn't in a race against others – but in a soul-building effort to do her very best and that was all that mattered. Mitch and I looked at her, and then to each other as our eyes filled with tears. We were so happy for her. She ran, and she won. And so did everybody that loved and supported her.
I was fascinated to see Mitchell's deep empathy for others - that he would become emotionally moved by the triumphs of another person. That experience touched me to the core. Little Mitch also ran races that day in his own wheelchair and we were so proud of him. He did his very best and that was all that mattered. But he loved others, and that mattered even more.
Races are relative. And because of my son, not a day goes by I don’t ask myself how I’m running mine.
When The Parent Project MD asked for permission to use one of Mitchell's photos for this white paper I was and continue to be very supportive. However, I wasn't prepared for my emotional reaction to seeing this particular photo. It was, and remains, difficult to look at because our little son's heart was failing and we felt so very helpless.
At the moment this photo was taken Mitchell had just finished one of his last Nerf gun battles with his best buddies. His loyal friends called him “commander” and listened to his strategies and followed his lead. It was so cute to see. Mitch wanted so badly to be a little boy and do what little boys do. It wasn't long before he became faint because his blood pressure was so low and his body so weak. This photo shows his mother holding and reassuring him when he hardly had the strength to stand. All the while Mitchell kept pushing himself up because he just wanted to keep up with his friends. He wanted to live. He wanted to thrive.
So while this photo is hard for me to look at, it is necessary and it is relevant. Life has a way of dishing out hard things and often there's little we can do about some of the difficulties we encounter. But we can choose how to respond to hard things, to rise above them and use those difficulties to help others. And if Mitchell's story can help save lives and heal hearts (physically, emotionally or spiritually) we will do all in our power to help.
On June 29th we will be speaking at PPMD's International Conference in Baltimore. We've been asked to share Mitchell's Journey and help put a face and story to cardiac challenges related to Duchenne Muscular Dystrophy. Putting patients first – a worthy endeavor. That is the goal of PPMD, and it is our goal to do all in our power to help them.
Mitchell's Journey hopes to personify the many challenges that surround DMD ... because they are real, and they hurt ... and they kill. In the end, we hope Mitchell's Journey can point to hope, healing and finding happiness - no matter our individual hardships.
http://community.parentprojectmd.org/profiles/blogs/putting-patients-first
A few years ago our extended family went on a group vacation. It was a time of great excitement as distant cousins reunited and family bonds strengthened. Mitchell always felt awkward and shy around others because his muscles were weak and he didn't have the strength to do what everyone else could. He often sat in the background as a spectator – never wanting to impose his needs or wants on others – even though he would have done anything to be recognized and to participate. More often than I want to remember I observed people look over him as if he were invisible. It is for this very reason this photo means so much to me.
While at the airport an uncle reached down to invisible Mitch and placed him on his shoulders. Together they flew down the concourse … arms open and soaring like a bird. His uncle didn't care that other adults, strangers to him, could see and hear them. He didn't pretend to be so important or busy with adult things that he couldn't break decorum and be bothered with a child. Only loved mattered. And that is what he gave Mitch, in abundance. Mitchie smiled and laughed and my heart exploded into a million pieces of love and appreciation. For a moment, Mitchell was free … he was powerful. For a moment Mitchell felt like a superhero. As I sat back and watched this great man love my boy I shed tears of gratitude.
Two [almost invisible] years later our little boy would die. And all that Mitch hoped to do and become died with him.
As his father I wanted so badly to put my superhero cape on and save my son. After all, he thought I was a superhero ... but I was only mortal and I agonized that I couldn't save my little boy. As it turned out, my little son was a superhero to me.
This summer we will see a lineup of long-awaited superhero movies. Each story selling the idea superhuman strength, epic battles, men (and women) dripping of brawn and testosterone are heroes. But the real heroes of life aren't laden with technology or smothered in dirt from far-off fields. Real heroes are almost invisible to the eye and most often discerned by the heart. They are among us living the lives of ordinary people. They are the ones who take the time to love and serve others: to give a stranger a friendly smile or a compliment, a compassionate ear, or some anonymous act of service. They are people who love and give freely with no thought of remuneration … whose only payment is the internal satisfaction they did good by being good.
Mitchell’s Journey has revealed many superheroes that were hiding in plain sight – all across the world. Many of you are superheroes to my son (and my family) because you reached out and loved him … and he felt your love and concern when the world became very dark and very lonely. It’s one thing to love someone you know; but to love a stranger, that’s divine.
In every way that matters my little son … who hardly had the muscle strength to stretch out his arms … is my superhero. Despite his failing body, he kept fighting with a smile on his face, hope in his heart and love in his soul.
Mitchell taught me that to be a superhero has nothing to do with physical strength at all – but everything to do with heart. While Mitchell lost his mortal battle, he has won the battle of the soul.