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.
As Mitch inched closer to the abyss he became more emotional. Already physically weakened by the catastrophic muscle wasting of Duchenne Muscular Dystrophy, he was now suffering from low oxygen because his heart was barely working. The heart is a muscle, too. Simple tasks that were once easy for him to perform were now nearly impossible. He didn't understand why Legos were suddenly so perplexing. Even his fine motor skills were greatly reduced. Mitch would weep because he wanted to be a little boy and this invisible monster had not only taken away the strength of his muscles but now his heart, which affected his mind.
In this photo Mitch was trying to build a Lego set that was gifted to him by a Mitchell’s Journey follower. He was so excited to build it and was touched that so many people cared. When he couldn’t make sense of the instructions he began to weep. I immediately set my phone down and held my son in my arms and kissed him and told him Daddy would help him. Mitch eventually calmed down and asked, “Dad, why can't I build Legos anymore? They are so easy. I don’t understand.” I responded softly, “Oh, Mitch, your heart is so tired and in need of rest. And your mind needs your heart. Because your heart is tired, so is your mind.” Mitch closed his eyes and rested a while. I wish I could have held him in my arms forever.
Mitch was remarkable in his fight to survive. His hospice nurse was startled how his body fought valiantly compensate for organ failure. “Your son is a fighter”, she said, “one of the strongest I've ever seen.”
Fast forward a few weeks and I would be reeling in grief over the death of a little boy who was in many ways a best friend to me. Though I was his father, the little boy in me lost a dear friend, too. And that hurt. A lot.
Then, in May of 2014 I received an email from a woman on behalf of her adopted son, Marco, who was an MMA fighter. She said her entire family was touched by Mitchell’s story and wanted to help raise awareness in honor of my son. She asked for permission to put Mitchell’s Journey on his T-Shirts, fight shorts and banners. I gave them permission and sent her the logo files so the printers could do it right.
I wasn't sure what would come of it, but something inside me felt it was right. A few months later I would then watch as this good man stand in a ring surrounded by a crowd of cheering fans. Marco had a look of determination in his face that was sharp, fierce and focused. By his mannerisms it was clear he believed deeply in God and wanted little Mitch to know he was fighting in memory of him. At that point the outcome of the fight didn't matter to me … for Marco already won. The bell would ring and in less than 2 minutes the fight was over and Marco was victorious. He fell to his knees and thanked God for the wind behind his sails.
What happened next brought me to tears. Marco would then take the microphone, undefeated, holding his belt and thanked God, his team. He then asked 14,000 people to look up Mitchell’s Journey and learn about a little boy who died from DMD.
Tonight, an hour from now in fact, Marco fights again in honor of Mitchell’s Journey and other boys who have DMD. What these boys lack in physical strength, Marco has in spades. That he gives his talents and strengths to the benefit these boys … and in honor of my boy, my best little friend, humbles me to my core.
Unlike Mitch, Marco has all the muscle and strength anyone would ever need. But Marco also has a heart … and a most sincere one at that. Regardless of tonight’s outcome, Marco, you have already won. From the bottom of my heart, thank you for remembering my son.
One more thing ...
There is another group who fights just as fiercely and honorably as Marco. Pat Furlong and Parent Project Muscular Dystrophy ... they tried to save my son from heart failure. I honor them for their continued efforts to improve cardiac care in kids with DMD. Here is a link to their page in honor of Mitch: https://secure2.convio.net/ppmd/site/Donation2;jsessionid=897727A6001B3EB4FE400EF84444784A.app272a?4380.donation=root&idb=1525494756&DONATION_LEVEL_ID_SELECTED=1981&df_id=4380
At the head of my son’s bed lay his favorite Halo mask and toy gun.
I purchased that mask when Mitch went to work with me, just before his last Halloween. He loved to have pretend battles with his friends; many of whom would call him “Sir” or “Master Chief” to show their willingness to follow his lead. While Mitch was physically weakest among them, he possessed a strength and influence that transcended muscle and bone. Mitch, unaware, was a quiet but natural leader.
Even to this day, almost two years since I lost him, he leads me in the battle field of life. Whether I wrestle with enemies of the mind and heart, or take refuge from a sudden onslaught of grief, Mitch has shown me what it means to fight the good fight and to endure suffering with a grateful, loving heart. Though I cannot always control the struggles of life, I can decide how to respond to those struggles. How I respond makes all the difference.
I draw strength and inspiration from my timid little boy who struggled to walk, breathe and eventually live. I'll never forget little Mitch laying in this very spot, saying in shallow breath, “I don't think I can survive.” That quiet utterance broke my heart then and it breaks it again today.
Little Mitch faced an implacable, fatal enemy; and though DMD took his life, he fought the good fight, and he won. Mitch reminded me the battles that matter most in life have less to do with the body and more to do with the soul.
He taught me how to look past my troubles and find gratitude with what I have. Mitch taught me whatever I have is enough … and when there isn't enough, to share anyway. Mitch taught me how to bear my burdens with a glad heart and cheerful countenance. He showed me a heavenly paradox … that to lift another’s burden strangely lifts my own. These lessons, and many others, have sunk deep into my bones.
My sweet boy fought the good fight, and though he died, he won. As I face different battles I hope to fight the good fight so that one day, on some distant field, I might see my son.
In the summer of 2012 Mitch attended his last Cousin’s Camp where he was given a medal of honor for bravery. During the camp’s closing ceremony, his grandpa Garth called Mitch forward in front of the other cousins and awarded him for a quick decision that may have saved the life of one of his cousins.
The year prior Mitch and his cousin Ray were riding 4-wheelers when Ray’s vehicle tipped over and pinned him to the ground. They were quite a distance from the ranch house … far enough away that any cry for help would have gone unheard. Immediately following the accident Mitch hurried his 4-wheeler back to the ranch to tell some adults Ray was in an accident and in trouble. Because Duchenne Muscular Dystrophy weakened his muscles, little Mitch was powerless to lift the 4-wheeler from his cousin to help him personally. So, he did what we could do by racing to get help. Ray was seriously injured and bleeding internally. It was thought by his ER doctors he may not have survived more than an hour if left untreated.
Mitch didn't think much of his actions – he was only concerned for safety of his cousin and did what he thought anyone would do. Because a year had passed from the accident, this event was far from Mitchie’s mind. As far as he was concerned, all had been forgotten. But many of the adults didn't forget and they sought to help Mitch feel appreciated and special. They didn't need to do this for Mitch, but they did it anyway and I can’t help but feel this a tender mercy for my struggling son who often wondered if he would ever amount to anything.
I feel a wide spectrum of emotions when I look at these three images. On the left, our shy son was being given a gold medallion as a symbol of honor and appreciation from a loving Grandfather who cared deeply for his grandkids. Then the image of Mitch (top right) with his cousin, Ray … back together again, so they could laugh and play. On the bottom right is an image of Mitch was surrounded by cousins with arms linked cheering for him.
They gave the greatest gift anyone could ever give: they gave their love and they gave it freely. Mitch would later tell me his thoughts of this day with tears in his eyes – grateful for the love he felt from others. Though confused by the attention he received, he felt special and that was a gift greater than anything material.
When I was in college I had a dear friend teach me something powerful about labels. She would often say to me “you’re nice” in response to something I might have said or done. At first I was startled by that label because I never considered that I might be nice. And if I wasn't, after she labeled me, I sure wanted to be. I learned quickly that we often become what we’re labeled – and whenever she called me nice, I only tried harder to be nice to everyone.
So, on this warm summer day, Mitch was given a label much like my old college friend gave me. In every way that mattered, Mitch felt they labeled him. He felt like they said, “You are brave. You are good. You are loved.” These labels lifted Mitchell’s spirits and gave our little boy who was unable to much, a deep feeling that he mattered.
I hope on that fateful night, as my son’s life faded away and his spirit drifted to that place beyond the hills, I hope that this experience at cousin’s camp crossed his mind and gave him comfort and courage. I hope he felt the love and encouragement from those around him who cared. I hope those labels gave him the courage to look into the light, far past the darkness that was swallowing up his tattered body.
Sometimes I wonder what might have happened to my son’s soul when he crossed over to the other side. Perhaps there was a reunion of another sort. Maybe my earthly father greeted him and gave Mitch an emblem of courage; perhaps family long gone may have gathered round him and said “You did it! You were brave. You were good. You are loved.” Whatever happened, I am certain my son felt the goodness of Heaven above.
Parenthood … the most curious of things … how our love and concern for our children reaches far beyond those living. Though he is gone to a place that cannot be seen, I am still concerned about my son’s well-being. Such is parenthood. Such is love. I suppose it’s not too different from the worries of our Father above. For we, too, are loved.