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.
When Mitch was a chubby little boy he injured his hand. It wasn't serious, but tiny Mitch thought it was so Natalie lovingly wrapped his hand in cotton wraps to let him know she cared and that everything was going to be okay. These bandages were to his hand what his blankies were to his heart and soul.
I remember sitting on the floor in Mitchell’s room watching his dimpled fingers move carefully to make sure everything was okay. I marveled at the miracle of life – for there was a little boy I helped create. How could it be? Just a few years prior he didn’t exist and my heart was none the wiser. Yet there he was – this miracle of life and love. I marveled how this little child could come into my life and not divide my love, but multiply it. Not a day passes I don’t thank my God for my children … for trusting me with His children.
Mitch was so concerned about the pain he felt and whether he would even heal. As his father, I could tell he was young and didn't know what I did. To my sweet baby boy, his injury was the end of the world … for all he knew at that moment was pain. But, having a little more life experience than my son, I could see things he couldn't and I assured him the pain would pass and that he would look back and be better because of it.
Sure enough, a few hours passed and the throbbing pain that had him so concerned disappeared like a cloud on a summer day. All was sunny and well. Mitch, too, understood the importance of not putting his hand in things that could hurt him. He was, indeed, wiser because of that experience. Though it pained me to see my son in sorrow, I did my best to help him learn from that experience and assure him things would be okay.
Losing my son has introduced a pain that goes far beyond the reach of man and medicine. I wish there were mortal bandages to soothe the pains of death. Suddenly the tables have turned and I find myself in a great deal of pain, carefully moving here and there to make sure everything is going to be okay. Like Mitch was back then, I am the child this time, learning lessons from my Father. I hope I’m listening. I hope. And though I stumble and fall a million times, though I may disappoint Him because of things I should have done better or known better, I keep trying. I know He still loves me as I loved my son.
When I see this photo of Mitchell’s little hands my heart swells with great love and deep sorrow. I remember that I, too, am a child learning how to be a better person tomorrow.
I had no idea a few years from the time of this tender photo, years that would pass by in the blink of an eye, that I would hold these same, tender hands in the quiet of night and whisper into my son’s ear to not be afraid. That I would softly tell him how proud I was of the young man he had become … and that one day, when I grow up, I want to be like my son.
These tender hands, so innocent and pure, were put through hardship I wouldn’t understand for a few more years. Looking back now I know, my son was here to teach me how to learn and grow … to worry less about the body and more upon the soul.
I cannot help but think about what it means to hurt and to heal. It is a painful process and oh, so real. But like I tried to teach my son, and my Father is now teaching me, that the pain I feel shall one day pass and soon I shall see.
Mitch sat patiently at the examination table for one of his regular check-up’s at Schriner’s Hospital. Dr. Kerr, his Neurologist and DMD specialist, would soon arrive to monitor the progress of his muscle wasting. Mitch didn't seem to mind the wait; he was a good, good boy. Dr. Kerr was one of the great doctors. You see, good doctors treat the body, great doctors treat the person. Dr. Kerr was (and remains) one of the great ones because she always gave a thoughtful dose of personal care. And what a medicine that is. To know that someone cares wields great healing power; it can steady a troubled heart and even help put it back together again. Like epinephrine can boost human performance, genuine care can give an emotional boost that rallies strength to fight on. Care is a most powerful thing. Perhaps, among other reasons, it’s powerful because, anymore, it’s so rare.
Having worked with little boys with DMD, Dr. Kerr knew just how broken our son was. Beneath the surface of his soft smile and tender countenance, Mitchell’s was body breaking down on a cellular level. Whatever muscle strength he knew that day would soon fade away like a cloud on a summer’s day, never to return again. Though he looked healthy, my little son was fatally broken. The irony with my son’s journey was our little boy with the tenderest of hearts would die from heart failure.
As I captured this photo my heart went out to Mitch. I knew a little about the broken road before his feet because I had read some brutally honest books about DMD, what to expect and the catastrophic nature of progressive muscle wasting. Pained by his future, I searched the world over for a detour, a pit stop, or an alternate route. But there are none. There is only one road for these children and that road leads to certain death.
As a father, I have always tried to pave the way for my children’s future. Despite my efforts, which are often clumsy and weak, I have discovered my wife is a superior parent to me and she often charts the better way with my children. I am grateful to learn from her daily. I take mental notes and try to follow her example. She instinctively knows that the better path is often the inconvenient one. I love and honor her for that.
Yet, no matter how diligently we try to chart the course, sometimes the road ahead is broken. Less often, the road ends abruptly and we see, to our horror, our loved ones tumble into the abyss.
Until the end, Mitch seemed almost normal. He was still walking, though his gait was becoming more pronounced and walking distances shorter. He could still use his arms, though he couldn't pour himself a glass of milk, for even a half gallon had become too heavy. Each day for Mitch was a stretch of road. Some days it was clear and paved, other days were met with tremendous obstacles.
The broken road for our little boy was invisible to most. He just faced day, each broken road, with a smile … grateful for life.
If ever I was tempted to complain about the difficult road before us, Mitch constantly reminded me of the saying, “There once was a man who cried because he had no shoes, until he met the man who had no feet.” Mitch was just glad to have a body. I was often brought to tears whenever he said, long before his heart was in trouble, how grateful he was for life. If his life had a mantra, that was it. Though grief, at times, has me wish for death, Mitch taught me to be grateful for life. And while I may be tempted to be like the man who cried because he has no shoes, I love someone deeply who has no feet.
However broken the road may seem, I am grateful to still be traveling, for there are heavenly sights yet to be seen. One day, on the very edge of that place beyond the hills, on the horizon of that place I cannot see ... I will see a form familiar to me. I will run to him with bare and bleeding feet … to that lovely form so familiar, my son I shall meet