Several months before Mitch passed away a friend and colleague handed me a metal coin he created for one of his businesses. On the face of it was etched a butterfly and the word transformations. He gave it to his clients as a token and reminder of what we are meant to become, something far greater than we currently are. This good man, who has faced incredible difficulties of his own, learned to channel his own disappointment and sorrow into love and the service of others. I admire him greatly.
On this afternoon we took Mitch and the kids to the mountains where we would take our second-to-last family photo. Had I known what little time was left, I would have asked Natalie if we could take turns driving so we could each cuddle with our son.
We found ourselves at our destination surrounded by a forest whose colors, save a few patches, were nearly gone. Mitch and the kids scooted down old wood trail across the marshland. I reached into my pocket and discovered the coin my friend gave me, which I mistakenly thought I left on my office desk. As I held it I couldn't help but take a photo of it and contemplate the process of transformation. Soon, I would find myself wrapped in a cocoon of grief, wondering if all was lost and if life would ever be worth living again. Such is the sorrow of losing a child.
I really don’t know much about grief, but I’m learning a little each day, and each day I experience a little more of a transformation. I used to write of my journey THROUGH grief, as though somewhere a great way off, there would be an end to it. Any more, I write of my journey WITH grief. For as far as I can tell, grief will be my companion so long as I live on this earth. Such, also, is the sorrow of losing a child.
There was no way of knowing what would happen when I started Mitchell’s Journey. Like a camping tent, I set it up with the intent to eventually take it down. I don’t think I can do that now. Mitchell’s Journey has transformed into something I’m still trying to understand.
I will still write of hard things because hard things happened. I will share hard stories because I don’t want anyone to ever confuse DMD as an inconvenient journey. Duchenne Muscular Dystrophy is a fatal journey. 100% catastrophically fatal. Not one can escape it.
I recognize, also, the exhausting toll such stories can take. So, I am also going to write of the transformation I’m experiencing and the hope and happiness I feel in my heart. Today I feel as much joy in my heart as I do sorrow, which thing I never imagined nor ever quite supposed. The journey of grief has taken me places I never had a mind to go.
To those who are stumbling deep in the wilderness of grief, I want you to know there is eventually peace. It will never stay, not like it did before, but you will appreciate it when peace comes to you more and more. The road is long and skies sometimes dark and bleak, trust me when I tell you … somewhere out there, on your own journey, is happiness and peace. Just keep moving forward at your own steady pace and remember the journey of grief is not a race.
One day, perhaps at our journey’s end, we will look back on our broken paths and marvel at where we've been. I wonder if the parts of us we thought were so broken will be the very thing that transforms us like the promise of this token.
We decided to take our kids up Big Cottonwood Canyon (near Park City, Utah) before the snow came.
The leaves had fallen and covered the ground like crunchy wrapping paper on Christmas morning. Nature’s blush was fading fast and all the world was about to fall into a wintry slumber. Because the ground hadn’t frozen yet, you could smell the dirt, pine and leaves like a sweet potpourri made by the loving hands of Mother Nature.
Mitch loved smells and breathed in deeply with his nose and said, “Dad, doesn't it smell good outside?” I smiled softly at him and said, “Yes, son, isn't earth awesome?” He smiled back at me then a little while later took another big whiff of Mother Nature’s perfume. I couldn't help but notice how Mitch kept stopping to smell the air again and again. It was almost as though, without knowing it, deep down he knew this was his last chance to drink the season in.
This was his last outdoor adventure before it snowed.
We were high in the mountains, parked next to a natural marshland. Wooden walkways carved a path through some of the marsh, then to a dirt trail that circled a small lake. Mitch loved going here because he could see ducks, fish and all manner of wildlife. At one point Ethan and Mitch raced ahead to explore like young boys love to do. I took this photo of them peering over the edge of the walkway at some fish swimming near the surface in hopes of something to eat before the water froze.
Because DMD had weakened his muscles, Mitch couldn't walk long distances and used a scooter to get around. Ethan was always careful to make sure he never left Mitch behind. That simple gesture to wait for those who struggle to keep up; that is a measure of love and charity in my book. When I saw this quiet, unrehearsed act of love I wondered how often I had left others behind: others that could have used loving encouragement, a helping hand or a shoulder to lean on. There before me were two young boys unaware of the lesson they just taught me. They were just simply being young. They were just being good.
Mitch seemed to always care for others, too, and was mindful of those left behind. One Sunday, as the kids were getting ready for church Natalie noticed an extra set of scriptures in Mitchell’s bag. When asked about it Mitch said, “Oh, mom, those are for Luke because he sometimes forgets to bring his own.” Little Mitch didn't want his friend to be left behind or feel left out; he was naturally his brother’s keeper. When Natalie first told me that story I wept tears of love and gratitude. Not all tears are sad … some come from another place that make your heart feel glad.
I learned something this day I will not soon forget …
A measure of love is looking back to see who you can help. It is the deepest form of charity because it requires you to forget yourself. The funny thing about what it means to love and lift another, you never lose ground when you reach down to help a sister or a brother. In a world saturated with fear and hate we ought not throw sharp stones, but rather find those who are heavy hearted and seek to mend their bones. A strange thing indeed, the paradox of love … you cannot give it freely and not feel closer to heaven above. Looking back and helping others, that is a measure of love.
Mitch has gone far beyond … where mortal eyes can’t see. Though I stumble forward, trembling with grief and feeble knees, I sense somehow that he is helping me. Perhaps one day, when all is said and done, we'll see there was an unseen army helping us, when we felt like only one.
After all, isn't that how things in heaven are done? Its not so much about the 99, but rather looking back to find the one.
A beautiful measure of love, if I ever heard one.
Last night Natalie and I participated in the final leg of a short documentary that is being produced about Mitchell’s Journey. It will air in October and I’ll be sure to post a link to it on this page.
A few months ago I received a message from Candice Madsen who is a producer for KSL, the same news group and producer that aired stories about Mitch while he was still with us. She wanted to see how we felt about them telling more about Mitchell’s Journey and the effect it has had on others. We were so humbled by their request – and because we trust them we gave them permission. Since then they have flown around the United States and interviewed some people who have been touched on some level.
At some point during the interview I was taking snaps with my iPhone and everyone started to laugh and take pictures at the same time. It is my deep belief one can never take too many photos. This was the photo Candice took while Natalie and I were being interviewed by Brooke Walker, a co-host to Studio 5 and the narrator to the Mitchell’s Journey piece. She was also so loving and kind.
Although we have had little to do with the production of this documentary, save pointing the producers to a few followers, participating on some level has been a tender and humbling experience. Listening to my wife talk about Mitch and our family and her philosophy on life reminded me why I fell so in love with her many years ago.
I sure love my wife and I want to be more like her. She is so loving and kind, wise and thoughtful. I am so grateful that she puts up with me and I hope at the end of my days, when I am old and about to see my son again, that I can look into my wife’s eyes and know I did my very best to love and serve her. For the best way to honor my son is to love his mother … and love her, I do.
When my wife and I learned we were expecting our first child I remember being excited at first, then shocked and terrified. In my mind and heart I thought “I’m just a boy myself … how can I possibly be qualified to raise a child?” I was sober and shaken. Having come from a large family, I always wanted children of my own – but I was in my early 20’s and wasn't sure I was mature enough to take on the most important job I will ever have in this life: to raise a child.
But that fear only lasted about 5 minutes. Maybe 15.
With each child in the delivery room I became more emotional because I knew that tiny baby swaddled in cloth, eyes barely open and breathing for the first time, would teach me about love and sacrifice and what it means to be a father and a child. By the time we had our youngest son, Wyatt, I wept in the delivery room because I knew what I was in for … and my heart was overflowing with love, gratitude and anticipation.
This Thanksgiving our kitchen table will have one less person seated there. Mitch always wanted to sit by me, and I always wanted to sit by him. He always reached over to hold my hand while we ate and that melted my heart. His absence will be profoundly felt. I know I will smile … and I know I will cry. But most of all, I will be grateful. I will thank my God for all that I once had, all that I still have, and all that I will yet have.
This image is so special to me because it is the second-to-last family portrait we have. The last was taken just before Mitch passed away; and that photo is even more sacred. Though both images tug tenderly at my broken heart, they remind me I have much to be thankful for. They remind me of life’s greatest treasure.
And one day, when I see my son again, my gratitude will be so great there won’t be room enough in the universe to contain it.