“Hey little Mitch,” I said with a soft voice, pointing to the inside of a book. “Will you put your arm here so I can trace it?” Mitch looked at me with a soft but curious expression, “Okay, Daddy.” Mitch flopped his tiny arm on the book and said, “Huwwy, Dad. I have to play wiff fwends.”
Fighting back my tears, I carefully traced his little arm and even smaller hand. Anxious to go outside and play in the summer sun, Mitch didn’t know this book told a terrible tale about what he would one day experience. He only knew his mommy and daddy loved him and that they would always keep him safe. Mitch, like many young children, worried about monsters hiding in closets or under beds. I worried about the monster hiding inside his body. A monster so frightful and mean, all the science and medicine on earth could not stop it.
When I was done tracing his chubby little hand I kissed Mitch and said, “Daddy loves you.” With that, my little boy dashed away without a care in the world. Inside, I felt like I had the weight of the world on my shoulders.
For nights-on-end, I sat weeping at my kitchen table as I read this book … a book which, at once, read like a medical text and a horror novel. Though slightly dated, this was the only content I could find at the time that was unflinching in its description of DMD and offered candid advice on how to cope with the harsh realities of muscle wasting. I cried, and I cried. And when I felt pulverized by sorrow, convinced there were no more tears, grief found deeper reservoirs of the soul, and I cried some more.
It wasn’t until my son died less than eight years later that I discovered there is no end to tears. For if there is no end to love, there is no end to grief. At least while I’m mortal.
I believe one day grief will change. Not today. Not in 50 years. As long as I’m mortal, I will grieve over the loss of this little boy I love so much. Grief is a heavy burden of the soul. With each day I carry the weight of grief, I feel myself getting stronger. With each fallen tear, I am learning a deeper compassion for others who hurt. With every heartfelt prayer for relief and understanding, I draw closer to my Father. I know He is there, and I know He cares. I believe He wants us to be strong as well as good – and that is partly why we suffer. I am not strong, and I don’t think I’m very good … but I’m trying. I will never stop trying.
I found this book the other day as I was preparing for a Mitchell’s Journey presentation at a medical school. I had long forgotten I traced Mitchell’s tender hand so many years ago. When I opened the book my heart fell to the floor. I cried that moment like I cried way back then. Only my tears were from loss, not the anticipation of it.
This little hand is evidence my son lived. Though he is gone now, the memory of Mitch lives in my soul, and I cannot get him out of my mind. I am grateful that his memory isn’t a source of agony anymore – but instead a source of deep love and joy, and yes, still pain. Because of Mitch, I have gained a deeper appreciation for life, family, and love. I have learned what it means to be a father and a son. Though imperfect and flawed, each day I try to be a better one.
In April 2013 we were approached by a dance instructor who was seeking permission to choreograph a dance in in memory of Mitchell. The theme of the concert was Inspirations ... each dance dedicated to a figure or ideal they felt was inspirational. Evidently, her students were aware of Mitchell's story and he was at the top of their list. We were touched by their thoughtfulness and gave them permission to move forward.
Last night my family watched their first performance and it was beautiful. We were deeply touched that these dancers, each young and with a life ahead of them, would stop and reflect on Mitchell's story and illustrate it with such an expressive art.
Just before this performance, I found my hands shaking, unsure if I could keep it together. Tears of sorrow, tears of gratitude and love flowed.
I remember looking to Wyatt only to find him weeping because he missed his older brother so much. He was so touched by the dance.
It occurred to me on the drive home how much Mitchell loved to dance. He would spontaneously break out in an awkward little shimmy because his muscles were weak and getting less coordinated. But he would dance anyway - he didn't care - because he was happy and felt safe and loved. Whenever he danced my heart would explode ... he was so cute to watch. We have been able to capture his little dances of happiness on video and will share them some day.
So to watch these students of dance tell his story and journey home was humbling. And then, later, to reflect on Mitchell's love of life that he often expressed through his own little dance ... I was humbled and reflective. This choreography ... this art of music and movement ... took on a much different meaning.
To the Dance Company, Creative Arts Academy and the students of Jefferson Jr. High School, we thank you from the bottom of our hearts; not only for the beautiful tribute to our fallen son, but for the reminder that life is still good and we should dance when we're happy ... even if we can only shimmy.
After Herriman City Council read their proclamation and voted in the affirmative to dedicate his birthday as the "Mitchell Jones Day" I addressed the council and said the following:
"We are grateful to the Herriman City Council, especially Mayor Mills, who have graciously recognized our son, Mitchell and what his unique and difficult journey has meant to so many people.
Because Mitchell’s Journey has had a global reach and touched people on a very personal level, we have decided to start a foundation called Mitchell’s Journey wherein we will better organize our efforts to help raise awareness for Muscular Dystrophy, partner with the Parent Project MD, and offer help and support to others who face similar struggles.
Mitchell’s Journey has put in motion conversations in the medical community [on a national level] that we’re told will change the landscape of cardiac care for children who have Duchenne Muscular Dystrophy. This is no small thing. And we are grateful that Mitchell’s Journey has become a catalyst for progress.
Mitchell’s Journey has become more than a beacon for Muscular Dystrophy awareness, it has also served as a human spark … awakening in tens of thousands of people across the world a renewed commitment to faith, family and humanity. This was something we never anticipated. Mitchell’s Journey has become a source of inspiration for people across all walks of life.
In fact, the majority of followers are not afflicted with any disability at all. This reality sugests there are often more than broken bodies that need mending. On some level, we are all broken ... and perhaps through Mitchell’s Journey people are finding meaning and purpose with their own struggles. For this we are grateful.
On Saturday April 27th, two days before Mitchell’s Birthday, we will have our first organized fundraiser. Details for that event will be announced to the media, through our Facebook page and other mediums.
In the meantime, we are deeply grateful for the support we’ve received so far and hope to pay that goodness forward and bless the lives of others through Mitchell's Journey.
Thank you."
We were humbled to learn that one of Mitchell's Journey followers created a piece of jewelry in honor of Mitchell. She is donating all of the profits directly to The Parent Project MD, the organization that came rushing to Mitchell's aid when he was admitted to the hospital in February. We are grateful to Cathy's Creations.
http://cathyscreationsjewelry.com/Mitchells-Journey-Pendant-Mitchjrny.htm