A dear friend of mine I met on #mitchellsjourneyalways runs (and he runs a lot) with an image of my son on his shirt. Though we are a world apart and our language and cultures are different, I love this man like a brother.
He just ran a half marathon in Tel Aviv in memory of Mitch and sent this photo and kind message that Mitch is never far from his heart.
Two years later, he remembers my son.
One day, I would love to meet him in person.
It was an especially hot summer that year. The desert sun beat down on our skin like an oven set on broil. For some reason, even the shade of summer trees didn't offer much relief. Although we struggled to make ends meet, Natalie and I had just saved up enough money to replace our swamp cooler with an air conditioner. Finally, our family was able to take a break from the summer heat – and we slept much better at night because our small home was comfortably cool. I remember how excited our young kids were to wear their jammies in the summer because our home was no longer hot at night.
On this occasion, Ethan and little Mitch were in the back yard jumping from our plastic jungle gym into an inflatable pool. We seemed to go through at least three inflatable pools each year because the kids were always experimenting with them and they’d invariably pop them with sticks, lawn furniture, rocks and other things. We didn't mind. While we have tried to teach our kids the importance of taking care of things, we tried to balance that with a spirit of adventure and experimentation. Getting a few cheap pools a year was a small price to pay for the memories they made.
The news of Mitchell’s diagnosis was still fresh on our minds and heavy in our hearts. While in a state of shock, we did our best to live life the best we knew how, no matter how scared we were. Looking back, I’m glad we didn't let our fear of the future overtake us – for that would have robbed us of the moment. And those moments are priceless today.
So, I sat in the shade and watched our boys laugh and play. In my mind, I began to wonder how long this pool would last, and I smiled. Little Mitch dove bravely from the jungle gym into the pool head-first. This tiny little guy never flinched at the unknown and was eager to explore the world far beyond his comfort zone. This photo is so … Mitch.
I remember thinking to myself as I took this photo how much I admired his courage and zest for life. I quietly hoped Mitch would demonstrate that same courage in the years to come as his body dove into much deeper, fatal waters. True to form, over the years, Mitch would face his fears courageously. Whether it was his first day at school, MDA summer camp, or the scare of an unfamiliar rollercoaster. That isn't to say he was never afraid. Everyone is afraid of something. Mitch just faced his fears, however scared he felt, and kept moving on. He drank life in the best he knew how – he took all of it, the good and the bad. I always admired that about him and I often found myself following his quiet example, deep in his shadow.
Mitchell’s Journey with DMD has been terrifying. Grief, even more so. Yet, I think it’s safe to say I have found a measure of peace. That doesn't mean I don’t grieve. To the contrary, I grieve deeply … so very deeply. But peace, I have discovered, hasn’t come from the absence of grief and sorrow, but in learning to cope with it. I have found the most effective way to grieve is … to simply grieve. Like Mitch in this photo, when grief comes, I just dive in headfirst. Yes, I'm afraid of grief because it hurts. But, I have found the sooner I accept the sorrow, however painful it feels, I emerge from the deep waters of grief much faster. If I resist it, I may postpone it for a season, but in the end, it catches up to me and I only prolong the hurt.
When I look at this photo I am reminded that courage has nothing to do with physical strength. It’s more a matter of the mind and heart, seeing past the things that might stop us before we even start.
Thank you little Mitch for teaching me, however painfully, to live fearlessly.
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 didn't know it, but this was Mitchell’s last summer. As much as he enjoyed giant roller coasters, Mitch sometimes opted for the smaller ones so he could rest a little. Because generalized muscle weakness was settling in, riding the bigger coasters was hard for him. And, whenever he went on a big one, I would sit next to him, reach over and hold his head steady and do for him what his neck muscles no longer could. Mitch loved the thrill of rides.
On this occasion, Mitch and his brother Ethan were taking a ride on a much smaller roller coaster. I sat outside the perimeter and took photos with my larger lens. Though I was a distance away, it was almost as though I were sitting next to them. I have a bunch of photos from this series, each photo revealing different expressions of thrill, laughter, and surprise.
With a rush of wind, the caterpillar shaped ride whipped by me at lightning speed – offering brief relief from the heat of the summer sun. Each time they passed where I was standing Mitch would make very deliberate eye contact with me and smile. I would always smile back as though to say, “I love you, son.”
On this particular ride, I asked Mitch why he and Ethan closed their eyes. Mitch said he wanted to know if the ride would be different if he couldn't see. He said with great enthusiasm, “It worked! It was so fun. It was like a totally different ride.”
I love this photo on so many levels. I see two young brothers that loved each other with all of their hearts. Neither of them were peeking, but instead honorably doing what they agreed to do: experience the ride without sight. How easy it would have been to cheat and crack their eyes open a little, but as far as I can tell, they didn't. And what I know of these boys, they wouldn't. That is just like them: honest and true, through and through.
I am sure their memory of this experience may have faded quickly from their young minds, but I haven’t forgotten this moment. And at the time, I couldn't stop thinking about it. I thought to myself, “Perhaps little Mitch was on to something. How often do I go through life relying solely on the things that are plain to see? Perhaps, when I do, I’m cheating myself from life’s deeper mysteries.” I’ve always tried to look at life through spiritual eyes, but I’m still human and sometimes I forget.
This much I do know … when I look at my life with mortal eyes, I see sorrow and loss much differently … painfully. But when I close my lids, and listen with my soul to that quiet, heavenly bid, I know there’s more to life that I can possibly see. I am grateful for a loving Father who patiently waits as I learn to see things differently.
Who would have thought, two young boys on a rickety roller coaster ride would accidentally teach me something about seeing with my spiritual eyes?
I am human. I am still blind. But more and more, I’m learning to see with my spiritual mind.
One day, when I truly have eyes to see, my heart won’t carry that constant ache that hurts so terribly. In fact, my mind and heart will see things so differently. For, all my pain will have been traded for spiritual gain. Then, with tears in my eyes, I will see my boy so differently. I was never really teaching him, you see, for he was teaching me.
