A few months ago a friend and colleague of mine shared an interview question he heard several years ago. The question goes: “What’s one thing you know for sure?”
On the surface it might sound like a simple contemplation hardly worthy of a moment’s thought. But I have found it fascinating how deeply that question affects people: “What’s one thing you know … for sure?” Every time I've asked someone that question postures become upright, eyes search the air as if to find words and meaning. Suddenly things get real. No matter the person’s background, conversation gets deep and meaningful and thoughts invariably point to man’s search for meaning.
I remember the day of this photo so well. We took our kids to explore some unfamiliar park across the valley. We have a family tradition each summer called “Park Hopping” wherein we pack a meal and explore a park we've never visited. Knowing how easy it is to get entrenched by the routines of life we made a habit of stepping out of our comfort zones and enjoying the thrill of discovery.
On one occasion, when Wyatt was about 4 years old, we found a park we had never before seen and got settled on the grass. As I was playing with and taking photos of my kids I noticed Wyatt with his tiny hands reach into his little backpack and pull out a can of Febreze. He then started squirting a blanket we had just laid on the grass. He wanted to help out and thought Mitch might like the smell. With each squirt the wind would blow its mist in his face to which little Wyatt would quickly try and dodge. We all chuckled as this little boy who was trying to be helpful and domesticated.
I thought to myself how lucky I was to have children of my own. And as much as I love them, they are not mine… they are on loan.
A few years later, on the day of this photo, Mitch was especially affectionate toward his mother and wrapped his arms around her and leaned his head into hers. This was the day I took one of my favorite photo series of Mitch and his mom – which series now hangs in my home on a very special wall. As I browsed my photos that night I stumbled into these images and didn't appreciate until that moment the portraits of love I was lucky to capture. With tears in my eyes I then wrote in my journal “It’s quite possible that it’s altogether impossible to love your child too much.” If I felt strongly about that then, I feel even stronger about it today.
What’s one thing I know for sure? I know that I love my family – and they are more valuable to me than all the treasures of earth.
Just today I knelt by my son’s empty bed and thanked my Father for the gift of my son. I wept tears of sincere gratitude. I asked that He would let my son, who I know is also His son, know how much he means to me and that I miss him. What’s one thing I know for sure? I also know that God lives. I have seen His hand in too many things. There is no longer room for doubt; not because of what I've seen, but because of what I've felt. I know.
Although there’s a tempest of sorrow that storms in my heart, one day it will calm. And when it does I will look across the glassy waters of grief - from a place of understanding and heavenly peace.
I don’t know much about a lot of things - but there are a few things I know … and I know them for sure.
I was blessed with an opportunity to speak at a Women’s Conference this weekend about Mitchell and his Journey. As we are fast approaching the anniversary of his passing my heart has been especially heavy and emotions have been all over the place. Speaking about my son was hard to do, but necessary.
My wife and children came to listen and I was so touched by their love and support. As they sat in the front row I couldn't help but look upon their faces and feel deep love and gratitude for each of them. I have been blessed beyond my wildest dreams to have each of them in my life.
During my talk I shared a few metaphors that to me represented much of Mitchell’s Journey, and now my own. The first was the abyss of which I have so often written about. The second is about my wilderness, an essay I have yet to post. The third was my Everest, some of which I’ve already posted. And fourthly, a heavenly constellation of tender mercies, another essay I have yet to post. I will post those things in due time.
Honestly, I don't know why I keep writing about little Mitch. I can't stop thinking about him - and I don't think I ever will. I don't write to wallow or fixate on my sorrows. I don't do it to draw attention. I suppose I'm trying to cope with the loss of my son by sorting things out and putting my heart back together … and there are pieces everywhere. Often when I sit down to write I say to myself at the end “Well, I didn't see that one coming.”
For me this journey has been as much about discovery as anything.
I am still learning, and I ever will. While my heart is broken, my faith is stronger still. It matters not how deep the abyss or dark and frightening the wilderness. There are summits to reach and heavens that speak, “Keep going, my child. Press on.”
Yesterday I spoke of being a weary traveler stumbling down a broken road. This morning I awoke contemplating how life is a journey of many roads. I never imagined that Mitchell’s Journey would become woven into the journey of so many others. There was no way to know this journey of grief and sorrow would touch hearts and inspire people to choose different paths for their betterment. Or that people would rediscover love, family and faith. We are deeply humbled by all that has happened and still trying to put our heads around everything.
In truth, we would rather be an invisible family living out our lives with Mitch and our other kids. Mitch never wanted to be a catalyst for awareness or a source of inspiration … he just wanted to be 10. With all that I am, I wish I could have given that to him. But such was not our lot. To my great heartache, my son is gone and I can’t change that. But I can choose the steps before me – and I hope I can be like the Good Samaritan who stops to love and lift another.
It wasn't long after Mitchell’s passing I received a message from Melissa Dewitt of Colorado. Sometime prior she started following Mitchell’s Journey and was touched by our sons fight to survive. A stranger to us at the time she sent us a message that she might be in Salt Lake City soon and wanted to meet my family and visit Mitchell’s place of rest. With thousands of messages a month, it isn't possible to respond to everyone; though we try … we really try. Somehow the stars aligned and we connected. We were so touched by her kindness.
Within a few months Melissa and her family came to Salt Lake City and met us at the cemetery. It was both sobering and wonderful. They are such a loving, sincere family and we were blessed by the chance to know them. Since that meeting we have considered them dear friends of our family and our lives are richer because of them.
Just recently Melissa, having been moved by Mitchell’s Journey, decided to support PPMD – an organization that is leading the DMD & medical communities to find a solution to this fatal disease.
On May 18th Melissa will be running for “Run for Our Sons” … a PPMD fundraiser. For those who followed our story earlier last year, you’ll remember Pat Furlong of PPMD was the one that reached out to us and rallied the national medical community to try and save our son. Pat Furlong moved heaven and earth to try and save Mitch. We love and honor Pat and PPMD. They are making a difference. Every single day PPMD makes a difference. Every day they are driving solutions one step closer to a cure. But alas, a cure remains miles away.
For those who are able, please support our friend Melissa in her efforts to honor Mitch and run for our sons. http://www.parentprojectmd.org/site/TR?px=1550221&fr_id=3210&pg=personal
I am inspired by the many Good Samaritans we have met along our own journey. Melissa is one of them. She, like all of us, has a life and/or family to love and care for. She has a journey and road to travel that is uniquely hers – yet she decided to spend time and energy to help others who are afflicted with DMD. Other boys like Mitch. I love and honor her for that.
And then there’s Pat Furlong … a remarkable mother who lost two boys to DMD. Two. My eyes well with tears as I contemplate the enormity of her loss; two wonderfully, precious sons just like Mitch. She didn't shrink under the profound sorrow of losing her boys – rather she rose like a lion in defense of our sons and started PPMD two decades ago. Her road was also broken, yet she carried her broken heart while leading and lifting others. I am in awe of her.
So on this journey of many roads, I salute the Good Samaritans who take time while traveling their own journey, often at the expense of comfort or convenience, to help another. Melissa & Pat, and so many of you who reach out to lift and love, to lead and change … you inspire me. Every single day, you inspire me.
I stumbled across this photo recently and was swept back to this very moment my weary son leaned into my arm – like he so often did. For a moment I forgot about our troubles. Everything seemed normal and dreamlike. I couldn't believe it … it was all a bad dream. That was until I saw the cables coming from Mitchell’s arm … cables that reminded me my dream was in reality my worst nightmare.
Baby Marlie, ever the faithful comforter, sat patiently and lovingly on Mitchell’s lap. I was in the presence of two tender beings that were meant to be together – even if only in passing.
At that moment I couldn't help but think these two little ones were fellow travelers on their sojourn through life: one sick little boy about to die and would travel to that place beyond the hills, and a newborn puppy who had just arrived. They were unaware they were passing each other in opposite directions, but for a moment they gave each other comfort and I thank God for that. Although I experienced the absolute horror of losing my son, I witnessed a tender mercy for which I will be forever grateful.
Since my son’s passing I can’t help but think we are all travelers: some travel the straight and narrow, others take crooked paths, while others get lost in the wilderness. Some go nowhere. There is a saying, “Beware the man or woman who boasts 20 years’ experience, when it is the same year repeated 20 times.” I hope I’m always travelling forward – never backward or in circles. Still among the travelers are those few of whom M. Scott Peck wrote, that take the “road less traveled.” Whatever journey we find ourselves, we are travelers just the same. Sometimes we are weary travelers.
I have discovered on my own journey the work of grief is the hardest work I have ever known. It is emotionally catastrophic and everything is a wasteland. In truth, there are some days night can’t come soon enough. For my pillow beckons me and offers rest and escape from the sorrows that weigh heavy on my mind and heart. There are many nights long after everyone has fallen asleep, I wet my pillow with my tears. Tears for my son. Tears for my broken-hearted wife … and tears for my children who miss their brother with all of their hearts.
As a traveler who stumbles on a broken road I find myself weary and very much in need of rest. I don’t rest to run from my troubles. I rest to re-calibrate. I learned years ago we cannot run from our troubles, at least not for long. At some point, if we don’t work through them, our troubles will multiply. Rest we must. But work we must do, also.
A few years ago I learned baby chicks about to hatch must break through their shell on their own. Any attempt to break the shell for them, trying to make their life easier, is not only counterproductive but often fatal. The very act of their struggle gives them the necessary exercise to build strength so they can survive on the outside. What’s more, the time it takes to break free is also vital for their bodies to adjust to their new life. If done hastily, if they are robbed of their struggle, they often die.
Like those baby chicks who struggle to break through, at some point I will come out on the other side of this stronger. While I might be tempted to pray to God for relief … that He might make things easier, I know better. Instead I pray that He gives me strength equal to the task - for it is in the struggle we are made stronger.
I am a weary traveler on a broken road. I don’t feel strong. I often collapse. But like those baby chicks that are destined for a life on the other side of struggle, I will fight on. God willing, I will fight on.