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.
Two years ago we took our kids to the park on a sunny autumn afternoon. The heat of summer was behind us, the days were getting colder and we could feel the hint of winter’s breath on our faces. At the time Mitchell had strength to walk moderate distances and his valiant mother made every opportunity for him to enjoy what strength he had. On this day, however, Mitchell’s appetite for adventure got the best of him when, in a moment of quiet panic, he realized he walked so far that he couldn't possibly make it back.
Not fully aware what was happening, we saw in the distance two familiar forms run to him with strong arms and legs racing to rescue their little brother and bring him home. To the naked eye this scene was too far away to see or appreciate, but through my [400mm] lens this is what I saw. It didn't take long for my viewfinder to fill with tears as I witnessed unraveling before me the most beautiful, unrehearsed portrait of love.
Here were 3 little giants finding a way to make the best of their situation. A broken boy who got himself in trouble because his zest for life was greater than his body would allow; two siblings who abandoned their own youthful adventures to serve their little brother with tender care. In this moment I realized with crystal clarity that love is more than an emotional state. Love is a verb.
I have always appreciated the saying “It’s not the load that breaks you; it’s the way you carry it.” And recently this phrase has taken on a much deeper, personal meaning. The weight of grief is so great at times I find myself stumbling over pebbles. And when I look upon this photo, this accidental sermon of sacrifice and love, I am determined to follow my children’s example – to carry whatever loads are heaped upon me with love in my heart and a smile on my countenance.
We are about to frame the saying in our home: “Love is a verb. Get busy.” These are words to remember. Words to live by.
“I was raised to accept the reality life is tough, because it is. And at some point the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal. A part that loves deeply and hurts honestly. Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating. ”
My daughter took these photos the day after Mitchell came home. He was so excited to be surrounded by all that was familiar to him. My wife and I were anxious to hold, hug and kiss him without the spider web of cables, tubes and IV’s. It was a surreal time for us. 48 hours prior to this very moment Mitchell had a team of 12 medical professionals all working vigorously to keep him alive. At home he had 1 hospice nurse whose job was to help him feel comfortable and usher his body through the painful process of organ failure and death.
For Mitchell, touch was very important to him. There was no blanket that could replace the warmth that came from his parent’s embrace. Ever since he was a baby he would rub his forehead against mine -sometimes for minutes at a time. He wouldn't say a word and neither would I; we didn't need to. We spoke more in our silence and gestures than could ever be communicated by words alone. This was one of his ways of loving deeply and I never tired of it. I yearn to do it again today and my heart sinks to the depths of my soul that I cannot.
Within a few days of this photo Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne. He had an appreciation for the little things in life and I admired that about him greatly. A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted …
I will never smell things the same again. Never a scent my nose encounters that I don’t thank my God for all that I have.
Over the last 2 years I would occasionally ask Mitchell what advice he would give people about life. Without fail he would respond “Be nice to each other and be glad you’re alive. Nothing else matters.” With this philosophy he never varied. I found it fascinating that a child so young was so attune to the intrinsic value of life. What’s more, he understood the deeply spiritual value of kindness. Most young children seem to worry more about play things and consumption (perhaps too many adults do, too) – but Mitchell possessed a sobriety about life and relationships that was far beyond his years. It was as if his soul knew what was to come long before his mortal body failed him.
I was raised to accept the reality life is tough, because it is. And at some point the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal. A part that loves deeply and hurts honestly. Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating.
Three weeks after this photo was taken Mitchell’s weary and scarred heart, after having fought valiantly to survive, fluttered and stopped.
I would give everything I own, or could ever hope to be, to have my little son back with me. His broken heart, a heart that loved deeply and hurt honestly, was more noble and worthy than all the lions and bears on earth. Mitchell reminds me what it means to be human and that the lions and bears we often pretend to be are an emotional mirage. My son taught me there are no lions or bears, only humans. And to pretend otherwise is to cheat ourselves.