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."
Two days before Mitchell was admitted to the hospital for heart failure we decided to take our kids sledding near Park City. In my entire professional career, work was never more demanding than it was at that particular time. But I decided to delegate tasks and invest energy in my son, who I sensed was about to get very, very sick. If only I knew how fatally sick he would soon become. But we didn't know …. I just sensed time was running out. And nothing else mattered.
Sledding that afternoon was so much fun. Mitchell had the time of his life. And when everyone was cold and tired and wanted to go home, Mitch asked to go on a few more runs … which we did. His appetite for life and adventure was nearly insatiable – which made his diagnosis of Duchenne Muscular Dystrophy an even greater tragedy and bitter irony.
Later that evening, after the sun had set, we drove into the valley for pizza and by that time Mitchell was beginning to get sick – the kind of sick you don’t recover from. The kind of sick that kills you. At first, the signs of heart failure were invisible. He simply didn't eat anything. He just sat there with a smile on his sweet face. As often as we asked him to have some of his favorite pizza, he turned it down saying he wasn't hungry. We even ordered an extra pasta dish we were sure he would love, but he turned that down, too. We had no idea his heart was becoming catastrophically sick.
What you see here is a capture of the last physical adventure Mitchell took in mortality.
I had a Stake President (a leader in my church) who once said in a meeting: “Don’t ever apologize for taking your kids on vacation or purchasing something you can afford; there’s nothing wrong with that. Purchase ‘things’ with money. But whatever you do, don’t purchase ‘things’ with time.” I immediately saw the great wisdom in what he taught . . . his point was the proverbial “things” people are tempted to chase after … the boats, cars and houses and other trivialities people work so hard to pay for have the potential to cost much more than money. And all too often that is what happens; without realizing it, people pay too high a price with the one currency that cannot be saved, traded, borrowed, or exchanged: time. And time is the greatest currency of all. There is so much we can do with time – if we invest it wisely.
This photo is a reminder of moments that matter. This investment of time with my son will pay dividends for years to come. Had I not listened to my heart I would have been paying emotional penalties and interest for a lifetime. I am grateful I don’t have to pay the price of “what if”. I saw a moment and I invested time in it. No professional advancement, no amount of money, no material possession has the same value as this memory has with my son. There is simply no comparison.
Relationships with family are the most important investment. Anyone that tells you otherwise is selling something … and it’s not worth the price.
This morning my wife and I drove to Mitchell’s elementary school to collect his personal and school belongings. The air was cold and the sky was wrapped in a dull, grey blanket of clouds that seemed to match the mood of things. As we approached the school I reflected on all of the amazing teachers and staff who had done so much to support and love our family and I was overcome with gratitude. There was no coldness in my heart.
I was doing okay until his teacher reached for a file box that contained everything that was Mitchells. In an instant, I was overcome by strong emotions and I did all that I could to hold back a massive surge of tears. Tears came anyway. My hands trembled and my body quaked as I quietly gasped for air. The pain of this moment was palpable.
There, in a cardboard box, were items that to a stranger would have no value; but to us, its contents were priceless. A plastic container filled with pencils and crayons that Mitchell collected, a name tag, pieces of paper with his handwriting … a potpourri of elementary school artifacts that to me were more valuable than all the treasures of ancient Egypt.
As Mitchell’s teacher (Mrs. Masina) handed the box to Natalie she gave her a hug. I stood a few feet away fighting back the tears, doing all that I could to keep composed. All I wanted to do was curl up in a corner and sob. This compassionate teacher described how much Mitchell meant to her and that she loved him – it was clear that she was hurting, too. With a broken voice she admitted handing the box over to us was difficult because she loved Mitch and she felt like she was giving part of her heart away.
After Mitchell passed away she had each student write down their memories of him. She carefully laminated and bound the pages into a book. Each page was thoughtfully authored from his peers ... each page personal and authentic. Mitchell was universally referred to by his classmates as kind, deeply caring, fun to be with and humble. Reading through these hand written letters and drawings from 5th Graders, I learned quite a bit about Mitch. I also learned a lot about 5th graders … especially what they notice. I was reminded of one of my favorite sayings: “Oh what a tangled web do parents weave when they think their children are naive.” In reading their observations it was clear these young children were reflective, thoughtful and keen observers. Today these young students were my teacher … and I have been taking notes.
This painful experience was a gentle reminder that education is more than academics – that knowledge without humanity is hollow. The best teachers also teach what it means to be human – not by what they say, but who they are. And Mrs. Masina did this beautifully … and so did her students.
So here we stand on the other side of Mitchell’s education … and suddenly we are students of the hardest lesson life has to teach. Our homework … invisible to the eye - must be worked out in quiet of the mind and heart. I get the impression this homework will take a lifetime to complete. And when I look at this photo of these two beautifully compassionate women, I am reminded that there is a classroom none of us leave alive. Sometimes we are teachers … but we are always students.
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