Toward the end of summer 2012, before I left on an extended business trip overseas, my wife and I took our kids camping. I had a certain uneasiness about me. I couldn't put my finger on it. Though used to travelling, this time was different. I was going to be on the other side of the earth for a few weeks and my mind and heart worried I might not see my family again. I knew this time was precious. How precious, at the time, I knew not. In the end, I believe my feelings were magnified because I knew time was short for my son. This was our last camping trip as a family.
We settled by a reservoir near Park City and the weather was beautiful. Whenever we went camping Mitch always wanted to sleep next to me – so as we pulled into the campground Mitch was the first to call dibs to one of my sides. I love him.
The tent was set, the kids were playing and I had just started a campfire when I looked to a nearby road only to find my daughter pushing Mitch on his wheelchair as fast as she could. Mitch laughed and smiled as Laura-Ashley took him for a ride. Mitch loved the wind in his face – but he loved his sister even more. His right knee, bearing a nearly-healed wound from falling a few weeks prior, was a reminder that walking was difficult for him and running impossible. What’s more, it was a subtle reminder that being outside the safety of a wheelchair was becoming increasingly risky for him. There was safety in a wheelchair because he wouldn't trip or fall – but it was also limiting. Laura-Ashley, knowing he couldn't run like others, gave Mitch the next best thing. In fact, it was far better.
I was struck by the beauty of this moment and also by the inward beauty of my daughter. I have always thought she was beautiful on the outside – but, to me, she is angelically beautiful on the inside. I admire her on so many levels. I once wrote of her: “My remarkable daughter: Kind to people who hurt her. Loving to others that hurt. Deeply artistic. Intelligent beyond her years. A fierce protector. A loyal helper. Astute observer. Simply beautiful. Beautifully complex.” She is all of that and so much more.
My sweet daughter had a very special relationship with Mitch. She was always so tender and kind to him – ever looking for ways to keep him safe and feeling loved. In my mind I can still hear her sweet tone every time she spoke with him. It was so unique. So loving. Her love to him was a warm blanket.
I’ll never forget her reaction the night Mitch passed away. It was about 4AM when I went to Laura-Ashley’s room to tell my daughter her little brother was gone. I gently placed my hand on her shoulder and woke her then whispered Mitch had passed away and tears immediately filled her eyes. Her little brother, whom she had given her heart and served with all her might, was gone. My heart, already broken from losing my son, broke even more to see this loving sister, my sweet daughter whom I also loved with all my heart, in great pain. I would have given my life to keep my son alive and save my daughter from hurt and sorrow. I wish death didn't have to hurt so much. But it does. And that kind of hurt is exquisite.
I will always remember this moment of love and service – how my daughter tried to give my son the next best thing but in reality gave him something far better.
Like my son who wished to be like “regular kids” and run free of his handicap, I am sometimes tempted to want for a “regular life” [if there ever was one] free from hardship and sorrows. But like my daughter taught me, the things we gain from adapting to hardships are be far better than what we get when we run free of the hard things that teach us what matters most ... and that is something far better.
This [center] photo was taken during Mitchell’s Make-A-Wish trip. The one thing he really wanted to do, but couldn't, was have a baby panda cuddle with him. Even though he couldn't cuddle with pandas Mitch was having the time of his life.
As the day had drawn to a close, after spending time at Disneyworld, we were walking to our rental car and Mitch stopped his scooter and started to run through fresh puddles just left by an early-evening shower. Mitch loved the theme parks, but he loved the simple things of life even more … like making a fort out of a cardboard box, splashing in puddles and running free. I loved the smile on his face this day.
Without realizing it, as they lose their ability to walk, children with DMD begin to modify their body movements to keep them balanced. The weaker they become the more pronounced their contortions. Mitch, as he ran to splash in puddles used his arms to keep him from losing his balance. I remember watching Mitch on his Make-A-Wish trip encounter bursts of energy and he would run short distances with an awkward gait. Mitch loved to run – and he wished so badly he could be like “regular kids.” Mitch was broken and different than other children. But he was mine. And I loved him. I still love him.
None of us could have supposed that within a few short years my sweet little son would be gone. And despite what my head knows, still my heart frantically runs to and fro in search of my boy.
Just after my father passed away I remember speaking with my Stake President (a leader in my church) about the loss of my father and the next phase of my life. I was hurting, alone and I was scared. I was about to turn 19 and had recently moved to Edmonton, Alberta to live with my father – who was very much alone. This discerning leader lovingly looked me in the eye and cautioned me to not run “from” my hardship, but run “to” what was next.
I always appreciated his deep wisdom and have never forgotten his timeless council. So, on that day, with tears in my eyes by the loss of my dad, I made a personal commitment to always face hard things and never run from them. What’s more, I promised myself I would run with purpose to the future.
Run to, not from. There is a difference in how we run … and that difference is profound.
As many of you know the original purpose of this Facebook page was to keep family and friends aware of Mitch and his condition. It was supposed to be a quiet place of sharing – and I assumed it would be invisible from the world, just like my family was. My hope was that Mitch would find a little comfort that a handful of people loved and followed him and occasionally cheered him on. But as he grew weaker and sicker more and more people came running to love him; so many of you were so good to him, and my family. Thank you. I was brought to my knees with gratitude every single day. I still am.
Over the last 10 months people from all across the world have done things in honor of Mitch and other boys they know and love who also have Muscular Dystrophy. They did what they could to raise money for PPMD, for research and raise awareness of my son’s killer. Here are a handful of people who ran because my son couldn't. They ran with dignity and purpose and I love each of them as though they were family.
These compassionate men and women ran with purpose - and so shall I.
And on that day I see my son in that place beyond the hills, I will run to him. I will run as fast as my legs will take me.
About seven years ago my in-laws invited our family to join them on a trip to Hawaii. Mitch was little, Wyatt was a toddler, and Laura-Ashley and Ethan were young and full of energy. The trip was a gift, but the experience of spending time together was an even greater gift. Today, the memory of that time together is the greatest gift.
Mitchell’s faithful Aunt Sonya came, too. Whenever possible she put Mitch under her wing and helped him enjoy life’s treasures before the hour grew too late. She knew the troubles that would soon come to our son in a way we did not. Her profession gave her a unique vantage point as she saw the biological horror show of DMD first-hand. She was careful to never frighten us but I could sometimes tell by the look in her eyes she was holding back a little – she knew the storms that lie ahead. But we had today.
We spent the better part of the day swimming, making castles and rolling in the sand. Grandpa even helped Mitch catch a few waves on a boogie board. He loved that. Mitch was so cute and playful and was always concerned about getting sand in his cute little bum. The water was warm as a gentle bath and I finally understood why some call Hawaii a paradise. As the day was yawning to an end I noticed Sonya and Mitch on the shoreline watching the sun as it slowly set. Mitch loved sunsets. I remember thinking to myself when I took this photo that Mitch was lucky to have Sonya. And I thought to myself how lucky all of us were to have him.
I wonder what my son was thinking as he looked into the ocean, as far as the eye can see. I can still hear the surf crashing softly and the ocean wind as it whispers through the palms.
As I was meditating over this moment earlier this morning my wife came into my office and handed me a health insurance form to sign. I asked what it was for and she said it was to verify the termination of Mitchell’s coverage. In an instant my hands began to shake and my heart sank to the floor as we took one more step into our new, painful reality.
As far as the eye can see,
grief stretches vast, and deep
even to infinity.
But there is more to grief
than pain and sorrow,
it is the longing to see my son
on some tomorrow.
My wife took this photo of Mitch and me at his Make-A-Wish trip in Florida a few years ago. I loved carrying my son and I loved the feeling of his little arms around my neck. I miss that. I miss everything about him. As Mitch grew so did the burden of his care – but those burdens were an easy price to pay for the gift he was to us.
Moments prior to this photo Mitch had tripped and fallen to the ground. (see: https://www.facebook.com/photo.php?fbid=629906097039055&set=pb.192859897410346.-2207520000.1388340960.&type=3&theater)
DMD, a progressive muscle wasting disease, made walking increasingly difficult for our son. While boys are young and still able to walk they begin to fall easily – and falling becomes more and more frequent until they cannot walk at all. And when they fall, they fall hard because they do not have the strength or coordination to break their fall. Gravity and ground make for unfriendly opponents to these children. The moment Mitch fell on the curb his sister came rushing to help him and I remember getting teary eyed when I took that photo of her lifting him up. I had tears of sorrow for my boy who was innocent and good yet was required to carry a heavy, fatal burden; I also shed tears of gratitude for my daughter who was also innocent and good and did all she could to love and protect her brother.
I ran to Mitch and said “I’ll carry you” and in that moment he lifted his little arms toward me. My heart swelled. I held him tight as if to hug him as we walked a short distance to our car. I kissed his cheek and whispered to him. I wanted Mitch to know I would always carry him – for as long as I could – and so would his mommy. My wife took my camera so I could hold Mitch and she took this photo. I didn't realize the expression on his face at the time and I am so grateful to have it now.
There are so many ways to carry each other. Sometimes we must do it physically – but more often we can carry each other in other ways that are just as helpful. I believe one of the reasons we are born with weaknesses is not only that we might be humble and [with God’s help] turn those weaknesses into strengths, but that we might learn to set aside our own pride or self-interests and serve others who may not have the same weaknesses we possess. The economy of lifting others and carrying them with love and concern pays heavenly dividends if we jump in and do what we can.
I have never served someone with love and concern and thought to myself afterward, “I wish I didn't do that” or “that was a dumb thing to do.” To the contrary, every time I tried to lift another I felt a lift within me, too. There exists a profound doctrine that teaches that we not only grow grace by grace (step by step) but also grace for grace (we get what we give others). And when we carry each other the best we can we get what we give… and we grow.
Losing my son has broken my legs and my heart and every bone in my body. As a result, my steps have felt smaller, more tender and timid. But as my heart and bones are healing my footing is becoming more secure and more sure. I have spent my life trying to carry my son and now that he is gone, I get the sense he is now carrying me … as I am now the broken one.