We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs.
Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.
He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life."
I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.
I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong.
Whatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.
He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see will come from the light within.
Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.
I don’t know much about grief and healing. I only know that I am a student of love and loss and I’m taking careful notes. One thing I’ve learned is that when I try to create new memories … new moments of love and laughter … hope grows and healing deepens.
We’re not a perfect family, not by any stretch. Even with our best efforts, we fall short a million miles. Maybe two … or ten. We struggle like every family struggles. We disagree, sometimes argue and on occasion we hurt each other’s feelings. But we don’t mean to. We make mistakes – but we always find our way back to forgiveness, love and laughter. Perhaps finding our way back to each other is what makes family so beautiful and so powerful.
Yesterday our family stopped by a park that was filled with changing trees and a grass covered with fallen leaves. We tossed leaves in the air in memory of Mitch. He loved to do that. As I saw my family laugh and play, my heart felt an increase of hope and healing.
Finding this depth of joy was like stumbling across a hidden treasure on a long, barren journey. A journey of grief where hope can sometimes feel like a mirage. Illusory. A promise of something ever out there in the distance, far beyond mortal reach. Yet there it was … not out there in the distance but right here, in my heart and soul.
I still cry for my son. I yearn for his company and I miss him terribly. Yet, despite those sorrows, hope and healing still happen.
Could it be that is one of grief’s great mysteries? Not that sorrow diminishes or goes away, but it can be displaced by new memories we make each day.
I’m still grieving, but I’m discovering a new kind of hope and healing … and that is a wonderful, wonderful feeling.
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.