Little Mitch was less than 24 hours from being admitted to the ER. We would then learn he only had days left to live. After a rigorous battle in the cardiac intensive care unit, we took Mitch home to live out the remainder of his days where he was comfortable and surrounded by everything and everyone he loved. No time in my life has been more sacred than that time with my son. We were blessed to have him 3 short weeks … which were also the longest weeks of my life. My knees are still bruised.
I’ll never forget how little Mitch leaned into his mother’s embrace in search of comfort. As his parents, we were desperate to rescue him. He was in a great deal of pain as organs in his body reacted violently to his failing heart. It is a tender, terrible irony that a little boy who had such a loving heart would die from heart failure. Natalie held our boy in her arms, also in search of comfort. But there was none to take.
Over the next few weeks we would watch our once vibrant son wither away. I wanted to have that one last conversation with Mitch. I wanted to tell him for the last time how much I loved him and how proud of I was of him. I did tell him such things while he was home … but I wanted just one more. I wanted to tell him that when I grow up, I want to be just like him. I still do.
In 2012, the Thanksgiving prior to Mitchell’s passing we were at my in-laws at a family function. Everyone took a turn to share the one thing they were grateful for. Most parents shared their gratitude for their family and for God. Children shared their gratitude for toys, family and friends. When it came time for Mitch, he simply said, “I’m just thankful to be alive.” I recorded him saying that with my iPhone. I remember that it took a maximum effort to not burst into tears at that very moment.
Another bitter irony that a child who intrinsically valued life would have it taken from him so young.
Comfort and spiritual assurance came and went like a heavenly tide under the dim light of tender mercies. After my son passed away the sky, which was already pitch as night, drew darker still. There were times I sought after heavenly answers and peace … and I received nothing. It would take repeated efforts to reach heavenward before certain answers came. Looking back, I can see that my struggle to find answers and peace [peace, where there was none to take] … that very struggle taught me things I needed to know. I discovered things I would have never learned had answers and peace come at my beck and call, as though God were some kind of cosmic butler. He is no such thing. But He is a parent and a master teacher who understands nothing of value comes easily. Sometimes the answers we seek are discovered in the struggle itself.
I often hear or read statements like “choose happiness” as though it were possible to blithely lay down our troubles like heavy, unnecessary luggage and simply move on. No sentiment could be more naive or insensitive to those who are trying to find their way through the wilderness of grief and trouble.
How are we to find peace where there seems none to take? It isn't choosing happiness, first.
At least for me, I have discovered that when I first seek meaning and purpose, happiness eventually follows. More than happiness, actually; I experience deep joy and a calming sense of understanding. Yet, when I seek happiness first, I forever hunger for that which cannot satisfy.
Little Mitch taught me to first seek meaning and purpose, then peace will follow. Understanding will fill those places that seem so empty and hollow.
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.
So grateful this Thanksgiving for my little family: they are all I ever wanted and more than I ever dreamed. I'm thankful for yesterday, today and the promise of tomorrow.
Photo circa 2009