Each year Mitch was invited to go to the mobility lab at Shriners Hospital where technicians would attach sensors to his body and, with the help of sophisticated computers and cameras, model his mobility and muscle decline. I was always there to document the experience. While doctors were capturing his muscle movements, I was there to capture his beautiful, tender soul. Most importantly, I wanted my son to know how much I cared about him. I never wanted him to turn around and see a cold, empty chair where I should have been. I did my best to cheer him on until the very end. Although his body was getting weaker with each visit, I saw his countenance and kindness grow ever stronger. Sometimes the strongest angels have broken wings.
In this photo Mitchell’s Aunt Sonya, a pediatric physical therapist at Shriners, ran with Mitch and turned what might be a scary experience into something fun for him. She was a special tender mercy to our family. She loved little Mitch with all of her heart, and he loved her like a second mother. Sometimes guardian angels blend in with the rest of us.
Mitch smiled as he faithfully completed each task. With each routine doctors had him perform, their computer models of our son began to replay his movements with incredible detail. On their screen was a wireframe of a person walking, jumping, or standing up from the floor exactly as Mitch did moments prior. The same technology to capture body movements for movies and video games was being employed for medical purposes and Mitch thought it was fascinating.
What might have been a trivial set of routines for a healthy child was much more difficult for Mitch and he always left the hospital exhausted. One of the early challenges DMD parents’ face, while their children can still walk, is hearing comments from people who seem dismissive and comment on our child’s large calf muscles. “Look how strong his legs are!” they say with a slap on your back, “You guys are going to be fine” not realizing what looks like muscle is actually scar tissue. The truth is, the stronger (bigger) their legs look, paradoxically, the weaker they are. Thus enters the very real feeling of being misunderstood and further isolated from the world.
Gathering mobility data from Mitch was not only important for tracking his own health, we felt a responsibility to the DMD community at large, to contribute whatever we could to a much needed body of knowledge. We were just a tiny, invisible family and what little we could offer, we gladly handed over.
As we left the hospital I began to think deeply about our experience that day. I wondered what would happen if we applied as much effort to examine our inner selves as we do our outer selves. It is so much easier to observe and tend to broken bodies, than tend to broken souls.
So, when I stumbled across this image early this morning, I immediately wept for my son. I saw my little boy who loved his life, and suddenly it was done. I then renewed my promise, to my Father and my son, to live a life examined and to love everyone.
Yes, there are broken things to mend and I am sure to stumble a million-and-one times … times ten. It won't be easy … in fact, I know it will be hard. And when I reach the finish line, I am sure to have some scars. But all of that will be a small price to pay, including grief and pain, for those are the things worth examining from which we stand to gain.
We had just finished speaking at our son’s funeral and my little boy’s body was rolled to the vehicle that would lead us on the longest, slowest, most painful drive of our lives.
It had only been an hour since I saw my son and the funeral director closed the casket, never to be reopened again. I longed so deeply to rescue my tired son from the cold.
There were so many layers to grief this day. Grief weighed heavy because I lost my son, who was in so many ways my best little friend. My grief was compounded because my wife, who has the most gentle and tenderhearted soul I have ever known, ached in ways I cannot comprehend. I grieved for her … for a mother’s love is unique … a mother’s love is deeper than deep. However much I was pained by the death of our son, I know this good mother ached infinitely more. I also grieved for my fallen son, who wanted so much to live but whose life was cut short. I grieved for my other children who, confused and full of sorrow, lost a dear brother they adored.
As I looked at my wife, she seemed to stare into the horizon as if to wonder how life could possibly continue. In my heart, I felt that way, too. Ethan stood stoic, peering into the back of the hearse at his younger brother, his best friend, trying to make sense of loss.
If ever I was tempted to feel like an utter failure, this day only amplified that. The days and months ahead would grow dark with grief. The pitch of night would, by comparison, seem light.
All the provincial things I thought weighed heavy on my shoulders suddenly seemed light as a feather. Crushed by the gravity of grief, I found myself stumbling over pebbles and gasping for breath. There were days that would follow I even wished for death.
Grief? Grief is just a flimsy word to describe the unimaginable. The indescribable. Grief is a pebble of a word, a grain of sand, even … hewn from the mighty Everest of sorrow. It points to a pain that simply defies words.
Ever since we lost little Mitch I have spent a great deal of time contemplating the wages of grief. At first, it felt like the wages of grief were only hopelessness and deep, dark sorrow. One can’t help but ask themselves “why my child?”, “why not me instead?”, “why in the first place?” The question I hear most often is “Why would a loving Father allow us to hurt so much?” I suppose we may never know (at least in this life) why some are required to suffer greatly while others are not. One thing I do know, for certain, is our Father loves us, and He loves us a whole lot. I know because I have felt it all along our journey, even deep in my wilderness of grief. In the darkest corners of my soul, He has offered me hope and peace.
The wages of grief are not always easy to see – especially when our vision is smeared by tears, pain and misery. Though painful beyond belief, grief is teaching me things I would have never learned in comfort and relief. Painfully, it is shaping me, and with heaven’s help it is not breaking me. And with each tear I shed, I am beginning to see things differently.
I still wrestle with grief every single day, but I am learning to carry my sorrows in a different way. Deep in the wilderness of grief I may be tempted to feel forsaken and alone … but when I quiet my soul and listen, I hear my Father and my little son leading me home.
Leading me home.
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.