It is nearly impossible to find the right photo that adequately captures what happened today in our small town in Utah and all around the world. Because of each of you, this run was a success. We will share more details in the coming days: how much we raised, the families we're going to be able to help, and some remarkable stories of hope, courage and love. Because this has been a global event, we still have people running all over the planet ... which is really neat to think about. If only Mitchie could have seen this. And though, perhaps in some way, he can see this from a different view point ... I wish he could have seen your love through the eyes of the little boy he once was.
We met some remarkable young boys today with DMD ... and families that are equally amazing. There is so much love in the world. So much hope. So much goodness.
As the dust begins to settle, I just wanted to thank all of you who have participated, donated and run wherever you are. I wanted to thank the amazing volunteers who have made significant sacrifices in time and their own money to help make this run a success. 100% of the proceeds will be going directly to our goals found on Miles for Mitchell: MDA Summer Camp activities, PPMD Scholarships, Ramps, Assist Devices and other forms of help for families in need.
Nothing quite helps a broken heart as to set sorrow aside and serve and love another. At least that's what I've discovered. And though I still carry the weight of grief, when I reach out to love and lift another ... somehow the world feels a little less heavy.
I'll share more about the run in the coming days. We were blessed to have some amazing volunteer photographers help capture the event: thank you Lindasy Ross, Jake Garn and Jace LeRoy for helping to capture the spirit of this event. As I get those photos, I'll be sure to share them with all of you.
Today, the world moved an inch closer to heaven. Thank you!
Without realizing it, my sweet wife often put her hand on Mitchell’s chest as if to somehow read, like fingers tumbling over braille, the fatal secrets his body held. We were waiting to learn the news about Mitchell’s heart and expecting to hear all was well and that the therapies put in place earlier that spring were working.
A few minutes after this photo Mitchell’s mild-mannered cardiologist entered the examination room and invited our daughter to take Mitch on a stroll down the hall so we could have a conversation. He would then tell us he was gravely concerned Mitch was at risk of sudden death because his heart function was dangerously low. We immediately petitioned the medical board for Mitch to qualify for a heart transplant. A few weeks later he would be denied because it was thought his diagnosis of DMD was a contraindication to transplant.
It was Halloween that night and Mitch was excited to trick-or-treat. He would only visit a few close neighbors before he became too weary to carry on. Mitch was always careful to ration his candy and never ate it in excess. In my estimation, restraint is a hallmark of maturity – and Mitch had a great deal of restraint and self-discipline. In truth, Mitch was most excited to go home and give candy to kids who came to our door – for he much preferred giving than receiving. To me, that was a beautifully quite measure of this young boy’s heart – for he would rather give than receive.
When I think of my dear wife and son, both with broken hearts – I change a little on the inside. I care less about things of the world and outward appearances and I ponder deeply on matters of the heart. For matters of the heart are also matters of the soul. In the end, those are the only things that matter.
A few months later, as Mitch began to slip into the abyss while at the hospital, then home on hospice; Tyson Breckenridge an old High School friend, collaborated with another old friend, Tyler Streeter, who has become a talented artist. Together they selected a photograph of my son and Tyler began the labor of love by paining my son’s likeness. Our family was so wrapped up in the calamity of our son’s failing heart and then his death we didn't know they were performing such a kind gesture of love and service. Then, one day, a not long after my son had passed I received a package in the mail with a handwritten letter. Tyler wrote, “It is so ironic to me that a young boy with a malfunctioning heart could fill so many other hearts with so much love.” He continued to describe how painting my son was an emotional experience for him and that he cried many times while painting my boy.
I wept when I read his letter. I even wept today when I read his words again. This gift from these two great men was more than an original painting … it was a gift from the heart and soul. I will forever be indebted to them for their kindness. The original paining, so artfully crafted by Tyler and lovingly orchestrated by Tyson, now hangs in our home on a very special wall, in a very special room. Tyler entitled the painting, “The Gift.” You can see a beautiful time-lapse video of the painting here: www.youtube.com/watch?v=Nxsptlwyk8E
A title aptly given … for if none else, Mitchell was at least a gift to me. As a young child I never considered that a gift might hurt. It never entered my mind that a hardship as heavy as losing my son might break me in places I didn't know existed, yet still be a gift. Who would have thought such strange things? Indeed, heavens ways are not our ways … and as the heavens are higher than the earth, so are God’s ways higher than our ways … His thoughts, than our thoughts.
Heaven’s gifts aren't always easy to see; they hide in plain sight or obscured by our vanity. What’s more, our Father’s gifts aren't always comfortable or easy – sometimes they hurt or bring us to our knees. That’s the gift! That’s what I've learned, you see: sometimes heaven is only as far away as our knees. A gift my son and broken heart would painfully teach me.
As far as I can remember, every time I've encountered a catastrophe in life I was bewildered by the challenge in front of me. “How can I possibly do this?” I would think to myself, “I’m not capable or prepared.”
When we learned of Mitchell’s diagnosis the road ahead appeared broken and treacherous and seemed to stretch for miles and miles … even to infinity. Those were days that had me struggling to catch my breath and steady my step. One thing I've learned on Mitchell’s Journey is the first mile is always the hardest.
The truth is, we've had many first miles. The day Mitch was diagnosed with DMD was a first mile and the road ahead was obscured by fear and the fog of the unknown. Often, for the first while, I found myself stumbling over … everything. The weight of grief was new to me and I had to learn to adjust to new burdens. Over time, the journey got a little easier. It wasn't that the obstacles were different or burdens removed, but my ability to navigate grew stronger. I have my Father to thank for that – for He has been my tutor in matters of the soul … perfectly kind and infinitely patient. One day I will fall at His feet and thank Him for everything.
At various points along our son’s journey we would encounter new challenges and new first miles. The day we learned Mitchell’s heart was failing was a new first mile, a new challenge. Six months later I would take this photo as we learned therapies weren't working: another first mile. Never had a hallway felt so long. Before we knew it we learned sweet Mitch was experiencing end-stage heart failure … another first mile. Finally, in what seemed in the blink of an eye, my son died and I had to walk the longest, loneliest mile of my life. Heaven felt next door, yet so far away.
Just yesterday I visited Mitch at the cemetery. I wanted to place two solar lights that might shine on his headstone at night. While there I met a woman whose husband died tragically just over a year ago. He is buried just a few plots away from my son. She had 3 beautiful children and a kind demeanor. My heart went out to that family and I grieved for them. My heart went out to those young children who are without a father. I prayed in my heart they would find comfort and peace.
At one point I asked how her grief journey was going and she replied just as I suspected … a mixture of progress and pain. She then told me how others tried to prepare her for the 1 year milestone … that somehow everything would get easier after that. To her disappointment, the one year anniversary passed and nothing changed – grief remained. Her loss and heartache was the same. I identified with her and said I heard the same nonsense from others. I told her I thought what she was feeling was normal and that I felt the same way.
I had the words in my mind, but I didn't think to say them to her; I just said to myself, “The first mile is always the hardest.” As I drove home I began to ponder what the first mile means to me. It isn't measured by time or anniversaries (such a thought is foolishness) … to me the first mile is a metaphor that points to deeply personal journey of grief. It can’t be seen or measured – only felt. Some people seem to run the first mile quickly, others walk, some crawl … but at some point in our journey with grief we make it past the first mile.
How do we know when we've passed the first mile? I’m not sure I know the answer … but at least for me, I think I have passed that threshold because I don’t live in a constant state of grief. Today, I have grief moments, almost daily, but I don’t live in a constant state of grief. Yes, I still weep and long for my son, but like a summer storm, it passes and soon I see the sun.
To be clear, grief is the longest mile I've ever known. Indeed, the journey of grief seems to stretch out to infinity; but I know where that road leads, even to eternity.
Yet, I am still mortal … I see so little, and understand even less. Though I know my son’s soul lives on, the father in me is empty and bereft. Thus, the pain of grief remains. Though my legs are weary and I often stop to catch my breath, this much I know: I've passed the first mile and I hurt a little less.
On Saturday we attended an MDA Muscle walk. I was so moved to see families of all kinds desperately trying to help the fight against muscular dystrophy.
On one level, it was difficult to be there because we wanted our son to be with us and we were reminded he wasn’t. On the other hand it was wonderful to be there because we met some families we have long wanted to meet. In fact, we’re going to spotlight one of those families at our Miles for Mitch Virtual Run on April 25th. If you haven’t yet, please consider joining our run virtually or in person: https://www.raceentry.com/race-reviews/miles-for-mitchell
You can learn about our goals for our virtual run here: http://tinyurl.com/mtj84pb
We didn’t need to be there – but we chose to be there because we care very much about these families who hurt and struggle. Our hearts were full of love and compassion for these kind families who face an uncertain and difficult future.
Natalie's sister, Sonya, also came with us to show her support. She was Mitchell's second mother and loved him as if he were her own.
At the end of the run Wyatt turned to his mom and said, “Going to this really made my day.” I felt a lump in my throat as I thought about how much Wyatt cares about others and only wants to honor his older brother by loving and supporting others.
I remember the morning Mitch passed away when I wrote "Mitchell's Journey is not over: it has only just begun ... in this life and the life after."
Two years later I am here to say that statement is as true today as it was then.
Mitchell's Journey is just getting started. This journey, while borne of grief and sorrow has morphed into a journey of love, faith and a hope for tomorrow. It's not my journey, I've come to see, its the journey of humanity - which is, indeed, a heavenly family.
I read your messages and I weep for your sorrows. Often, I fall to my knees in gratitude when I read your words of renewed faith and healing. All of you are so amazing. I read your messages and I wish I could respond personally to all of them, but cannot. However, you are all in my prayers, that your backs may be strengthened and burdens feel light .... and for those who walk in darkness, that you'll see an end to the night.