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
I took Wyatt to work with me today and had a most wonderful time. He is on the track system and has the next few weeks off and wanted to spend some time with me at the office.
So, he sat patiently while I was in meetings and never once complained. Just after one particular meeting this morning he asked me, "Dad how long was that meeting?" I responded, "Oh, it was about an hour." Wyatt said "Wow, that felt like 4 hours." I smiled, pat him on the head and told him that I loved him. I said, "One day, time won't seem to go so slow ... and you'll wake up and wonder where all the time went. You'll wish for it to slow down, but it will only seem to go by faster."
I then took Wyatt with me to see one of my clients - someone I've worked with for many years and has become a dear friend to me. We've traveled the world together and done some great projects.
My client-turned-friend even attended Mitchell's funeral, not because he had to, but because he cared.
So as I sat at his table ready to talk about some upcoming work for the year, he pushed everything aside, reached into a cupboard and pulled a bucket of treats, placed it on the table and just sat and talked to Wyatt for a while.
My heart swelled, because this good man cared about people ... and at the end of the day people (and relationships) matter most. My heart was especially touched because my friend's mother is dying of ALS right now. Though not the same as DMD, they share many outward characteristics ... most notably catastrophic muscle wasting; and at the end stage an inability to breathe, swallow or move on ones own. The timing is unknowable, but she might only have about a week left. I know his heart is heavy ... but not so heavy that he can't lift the heart of a little boy and help him feel important and good about himself.
Wyatt left his office feeling a lot more confident ... and as small as he is, that he still matters to big people. I am so grateful for good people like my friend Jeff. If the world were a cup, it would be overflowing ... correction, it IS overflowing with good people, just like all of you.
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.
A few years ago an employee of mine was getting married, and many of the people with whom we worked came to his wedding reception. Bruce Newbold, a dear friend, and colleague of many years came to the celebration. He no longer worked with our team but because we were all friends, he came not out of social obligation but of love and friendship.
“Heaven’s hand, although invisible at the time, was deep in the tapestry of our lives.”
The summer sun was about to set, and the wedding reception was nestled in a beautiful garden, deep in the shadow of a tree-covered hill. The air was comfortably warm, and it was another one of those perfect summer evenings you wish you could bottle up and save. I took a deep breath and drank in the moment, grateful for all that was – seen and unseen.
As friends and family of the newly wedded couple arrived, I began to see some of our colleagues and friends arrive, too. When Bruce and his lovely wife showed up, he was quick to say hello and offer his love to our family. Bruce had a tender place in his heart for Mitch, and I remember being so moved when I saw my friend give Mitch a loving hug. I could tell by the look on my son’s face that he felt special. Immediately I fought back the tears because my heart was filled with gratitude. I think everybody deserves to feel important and valued – and on this day Mitch felt all of that and so much more.
Bruce has a special gift of making people feel valued – but more importantly, he causes them to feel they are enough, just the way they are. Mitch sometimes wondered if he was enough … after all, he couldn't run and jump like other boys. In his little mind and heart, he sometimes wondered if he was worth less than others who could do things he couldn't. Mitch yearned to be like “regular kids.” On those occasions, I remember telling my son, with tears in my eyes, that I loved him no matter what. I reminded him that we are all mortal and flawed … and though imperfect I loved him perfectly. I didn't use the words, “you are enough” because I didn't know them at the time – but he knew my meaning, and it was the same.
I wonder how often people live out their lives wondering if they are enough … whether they measure up to some arbitrary or unreasonable set of ever-changing standards. Sometimes it helps to be reminded we are so much more than our mortal bodies and that we are just visitors in this place.
Without uttering a sound, Bruce speaks in ways more powerful than words … saying again and again, “You are enough.” Bruce has the gift of lift- and that’s just what he did for little Mitch on this day and many days before and after.
At the moment of this photo, my son’s fatal diagnosis was far from my mind. Mitch was healthy and seemed to be doing better than anyone expected. It was always the quiet prayer of my heart that somehow, some way, he would be spared. To my great sorrow and without mercy, Duchenne Muscular Dystrophy stripped my son of strength and eventually life.
I cannot look at this image and not sense a strong impression that there was so much more happening than I realized. Heaven’s hand, although invisible at the time, was deep in the tapestry of our lives. You see, this man was more than a friend to our family, he also played an important role in Mitchell’s Journey and became an instrument of God in ways I may never share publicly – for some things are too sacred to share. It will suffice to say, this good man and this little broken boy … my little boy … have some heavenly ties that both break my heart and sew it back together again.
I am grateful for those who, like Bruce, have the gift of lift. For they lend a helping hand to heavy hearts and souls that are lonely or sick. And on dark days when I'm discouraged and want to give up, when I struggle and wonder if I measure up, I think of my son, and then my Father and I hear a heavenly whisper, “You are enough.”