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.
Laura-Ashley really loved little Mitch. She cared for him on a deeply personal level, and Mitch felt it. Mitch really loved her, too. I would often find him hanging out with Laura-Ashley just to talk. She always offered him her time and most importantly her attention. Nothing shows love like caring attention.
I took this photo late March, 2012. Sunday the 25th, to be exact. Winter’s bitter chill was retreating and the first real glimpse of spring had arrived. Natalie and the kids were excited to go outside and get some fresh air, so we went to a small park just down the street.
When I think back on this time in my life, things were especially hectic and my mind was weighed by a million things pulling for my attention. I had just returned from a trip to Honduras and had a lot of catching up to do and I could have told Natalie I was too busy to go with them. I am afraid, as much as I’ve tried to be with my family, I may have said that more than my broken heart wants to admit. Surely it isn't reasonable to be everywhere, all of the time; but if I’m honest with myself, I know I could have done better. I wish I would have done better … and from now on, I will try to do better. Looking back on our lives is always a tricky thing … and it seems everyone’s a genius in retrospect. Hindsight displays everything so clearly: how much time we didn't have, the better path or smarter choices and the times I should have recorded my children’s voices. Like an old film in the attic, I replay my memories, my loves, my joys, my heartaches and regrets. I must be careful to not feed my regrets – for they can devour me if I'm not careful.
I believe regret should hurt just enough so we know not to do [whatever] again; almost like touching a hot stove … heat enough to teach, but not enough to scar or debilitate.
I’m glad I went with my family this day because I was able to take some once-in-a-lifetime photos of our kids playing, Natalie nurturing and Mitch smiling. Had my priorities been on important but lesser things, I would have missed out on life’s most beautiful things. My reward for time well spent are warm memories and photos like this ... which make my heart sing. These two children taught me something about love this day.
Two months from this photo, almost to the day, we would learn Mitchell's heart was broken and he was in trouble. I made this video that very night: vimeo.com/42931543
In less than a year, everything I knew and loved would be turned upside down and my son would pass away. Ask me now the value of this day ...
I wonder how often I have been suckered into believing only the big, rare things are once-in-a-lifetime. Mitch taught me, in the most painful way, every moment of every day is once-in-a-lifetime. I don’t get to go back and do this, or any time over. Time passed is time past. All I have to take with me into the future are the memories I made ... and they can soothe like silk or draw out like the sharpest of blades.
When I see this photo I feel more love than sorrow … and like the hot stove, I hurt for a moment, forever reminded there’s no promise of tomorrow. My wife, children and fallen son are once-in-a-lifetime blessings that I won't squander, not a single one.
Mitch taught me to drink life in like a thirsty traveler: for when the journey’s done, it’s done. And that sounds like once-in-a-lifetime thing, if I ever heard one.
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
At the head of my son’s bed lay his favorite Halo mask and toy gun.
I purchased that mask when Mitch went to work with me, just before his last Halloween. He loved to have pretend battles with his friends; many of whom would call him “Sir” or “Master Chief” to show their willingness to follow his lead. While Mitch was physically weakest among them, he possessed a strength and influence that transcended muscle and bone. Mitch, unaware, was a quiet but natural leader.
Even to this day, almost two years since I lost him, he leads me in the battle field of life. Whether I wrestle with enemies of the mind and heart, or take refuge from a sudden onslaught of grief, Mitch has shown me what it means to fight the good fight and to endure suffering with a grateful, loving heart. Though I cannot always control the struggles of life, I can decide how to respond to those struggles. How I respond makes all the difference.
I draw strength and inspiration from my timid little boy who struggled to walk, breathe and eventually live. I'll never forget little Mitch laying in this very spot, saying in shallow breath, “I don't think I can survive.” That quiet utterance broke my heart then and it breaks it again today.
Little Mitch faced an implacable, fatal enemy; and though DMD took his life, he fought the good fight, and he won. Mitch reminded me the battles that matter most in life have less to do with the body and more to do with the soul.
He taught me how to look past my troubles and find gratitude with what I have. Mitch taught me whatever I have is enough … and when there isn't enough, to share anyway. Mitch taught me how to bear my burdens with a glad heart and cheerful countenance. He showed me a heavenly paradox … that to lift another’s burden strangely lifts my own. These lessons, and many others, have sunk deep into my bones.
My sweet boy fought the good fight, and though he died, he won. As I face different battles I hope to fight the good fight so that one day, on some distant field, I might see my son.