We knew the time was soon coming Mitch would lose his ability to do … everything. Although we were in the early stage of DMD, Natalie and I felt it best to sell our home and find a place that would eventually accommodate his physical needs and give us time to grow roots in a community before the storm came. Mitch was such a young boy and didn't have any idea we sold our home and built a new one just because of him – neither did he have any idea the violent storm that was headed his way and would soon rip his life from him. That storm we were told would surely come, came much faster than any of us imagined.
In this photo we were sitting with our kids in the master bedroom; the carpet had just been installed and our home felt like a huge cardboard fort that we were going to start living in. The kids were so excited ... and the little kid in me was, too. At one point Mitch leaned forward and kissed Wyatt’s forehead. Wyatt, being a tiny little baby, toy still in mouth, tried to love his brother in-kind and give him a sloppy kiss as only teething babies know to do. I marvel how children instinctively know love … and I marvel equally how grownups and nations, who, through time and experience ought to know better, tend to forget how to love and be kind.
Wyatt was a tiny baby, just approaching his first birthday. Mitch loved being a big brother and was glad to no longer be the baby of the family. Mitch, having a younger sibling, was beginning to learn a new dimension of love. It is one thing to love and be loved by a parent or an older sibling, but to reach down and care for a little one … that is a different kind of service, a different kind of love. Mitch was learning to love anew. As his father, watching Mitch love his little brother, I was learning to love anew, too.
Because of the way I photo-journal, I often encounter moments unprepared – but I shoot anyway. I have come to appreciate the true beauty of any photo has less to do with light and composition (though helpful), but rather their true beauty is found in the stories they tell. I would rather have a million blurry photos of love and life than any number of staged moments shrink-wrapped technical perfection. Photojournalism, to me, has become something of a metaphor and symbol of how I try to live my life. If I hold out for the perfect moment, if I artificially construct something that isn't real, I will miss out on a million magic moments.
This simple, flawed and dimly lit photo captures my heart because the subjects herein are my heart – and this moment of unrehearsed love between siblings sweeps my heart to a peaceful place and it lingers there a while. I am thankful for those peaceful moments. As much as I try to be in the moment, there is a part of me that wishes to go back in time and re-live these magic moments – to drink it in more slowly and to savor every part of it. Though life can hand out great difficulties and bring me to my knees, there is beauty in the details of the moment – more than I had eyes to see.
To me, it is ironic that when I was young and growing I wanted to race to tomorrow and chase the promise and secrets it kept. Time, like a giant, invisible key was slowly unlocking me from the tyranny of parents enforcing curfews, bedtimes, chores and homework – tomorrow couldn't come fast enough. The minutes felt like hours and months miniature years. Time was an uncompromising tether keeping me from the freedom of the future. But tomorrow has come and gone … over 14,000 of them, in fact. Suddenly I have found my years add up and I no longer want for tomorrow or the quick passage of time, except to see my little son again. The older I get the faster time feels and I wish it to slow down like it seemed when I was young – because today I appreciate the value of magic moments in ways I didn't back then.
Tomorrow can keep its secrets, every last one … for there is magic in the moment and I will seek after them until my time is done.
A few years ago we took our kids to the park on a sunny autumn afternoon. The heat of summer was behind us, the days were getting colder and we could feel the hint of winter’s breath on our faces.
At the time Mitchell had strength to walk short distances and his valiant mother made every opportunity for him to enjoy his childhood with what strength he had. On this day, however, Mitchell’s appetite for adventure got the best of him when, in a moment of quiet panic, he realized he walked so far that he couldn't possibly make it back.
Not fully aware the trouble Mitch found himself in, we saw in the distance two familiar forms run to him with eager arms and legs; two children racing to rescue their little brother and bring him home. To the naked eye this scene was too far away to see or appreciate, but through my 400mm lens this is what I saw. It didn't take long for my viewfinder to fill with tears as I witnessed unraveling before me the most beautiful, unrehearsed portrait of love.
Here were 3 little giants finding a way to make the best of their situation: a broken boy who found himself in trouble because his zest for life was greater than his body would allow; and two siblings who abandoned their own youthful adventures to serve their little brother with tender care.
In this moment I realized with clarity love is more than an emotional state: love is a verb.
I have always appreciated the saying “It’s not the load that breaks you; it’s the way you carry it.” Since I have lost my son this photo has taken on a new layer of meaning and I can’t help but think about how I carry my own burdens. The weight of grief is so great at times I find myself stumbling over pebbles, worried I might break. But then I look at this photo, this accidental sermon of sacrifice and love, I am determined to follow my children’s example – to carry whatever loads are heaped upon me with love in my heart and a smile in my countenance.
Carry on and carry others … that is how we keep from breaking.
I have since printed and framed this photo with the saying: “Love is a verb. Get busy.” These are words to remember. Words to live by.
A year had passed since we learned of Mitchell’s diagnosis and our hearts were still tender. It was mid-July and the hot summer air wrapped our bodies like a warm sweater you couldn't take off. Only the shade of a tree, a soft breeze or a scattered cloud that covered the sun would offer a moment of relief. The sound of insects filled the air. I couldn't help but think of those endless summers I came to know and love during my own childhood; where the woods were vast and deep and perfectly camouflaged the forts we made of scrap wood and plastic sheets. Those summers I played with my friends deep into twilight. To this day I can almost hear the laughter of my friends or the voice of my mother calling me home.
The laughter I heard in my mind from yesteryear slowly faded to the back of my mind as the sounds of Ethan & Mitch came back into focus … and my heart was glad. Ethan absolutely loved his little brother, and Mitch loved him. I sat on the grass as these two little brothers romped around like little boys do. I remembered being just like them. In many ways, I still am. At one point Mitch spontaneously grabbed his older brother and kissed his cheek. Ethan instinctively wrapped his arms around him and hugged Mitch with all the love he had. Suddenly I thought to myself, “Now this is a life worth living.”
Although the future frightened us, we made a conscious effort to let tomorrow be – for we understood that to give in to worry and stress would rob us of today – and today was all we could count on. It wasn't easy. It took practice. But each day we became a little better at it. Each day we got a little better at living. A little better at loving.
It was about this same time in my life I was having a conversation with a dear friend about hardships and our experience with Mitch. He said, almost in passing, “Life is tough. And then your chocolates melt.” Although he wasn't trying to say anything profound, I was taken aback. I quickly wrote it down and committed it to memory. Bruce Newbold, my dear friend who has also become teacher to me, made a profound acknowledgement that life is hard and sometimes it gets even harder.
Yet despite my sorrows, life is still worth living.
When Mitch was 3 years old he was given a death sentence. My wife and I could have wasted away our days in fear of the inevitable. But at some point we realized life is also fatal – and none of us can escape it. The point of life isn’t that we escape death, but that we learn how to live it while we have it. And to live a life of love and service is life worth living.
As I said in a post last December, losing my son has been the bitterest of cups; it has turned my life upside down, but right-side up.
It isn't possible to count the many pieces of my heart that are still broken and scattered about – for they are without number and seem to stretch out for miles … even to infinity. But I am picking up each tender piece as I find them and washing them with my tears and putting them back where they belong.
And while I search to heal my heart, I have discovered each time I love or serve someone my heart heals a little – and that makes life worth living, too.
We were out of time.
The window to laugh, build Legos, have Nerf gun battles, and play games as a family had closed. As that window closed a new window was beginning to open. A window to that other place; a place that requires faith in order to see and feel … a place that hides behind a curtain of darkness where everything there is out of mortal view. I could feel the breeze from that new window that was opening – it was both calming and frightening.
Each of us came to Mitchell's bed to have a sacred one-on-one conversation ... to say goodbye to a sweet little boy who had been woven into our hearts and souls. As hard as it was to say goodbye then, it is infinitely harder now that he is gone.
This was the end and deep inside my heart I was terrified. Sweet Mitch knew he was about to die, yet he faced that harsh reality with dignity and selflessness. He wanted his mommy to know he was going to be okay. But inside I wasn't okay. As his father I spent my life trying to care for and protect my son and couldn't save him from DMD. If my son had cancer, he might have had a chance. But for children with DMD, there is no escape. Absolutely none.
When it was Ethan's turn, he knelt gently by Mitchell's bed and held his hand and told him how much he loved and admired him. As I left the room I turned my head and saw two young boys who just wanted to play – and my heart was pulverized. I quietly shut the door and fell to the floor and wept tears of the deepest sorrow.
This would be the last conversation they would have in mortality.
Later I learned that Ethan made sacred promises to his little brother. Ethan told little Mitch he looked up to him and that he would never forget what he taught him. He promised his dying brother he would live a life that would honor him. They talked for 45 minutes.
As my son was slipping away my mind and heart were wracked with self-doubt and sorrow beyond all description. A torrent of panicked questions flooded my mind ... "Have I said all that I want to say? Have I apologized for all of the times I disappointed him? Does he know how much I love him? Really, truly, does he know? How do I say goodbye to my little boy? Is my son okay?" Despite the panic and doubt in my heart, I tabled my emotions for my son and remained calm and assuring for Mitch. To Mitch I could fold mountains and put them in my pocket. But inside I was stumbling over pebbles.
I wasn't afraid of death for I know life continues after death. I know it. But I was afraid of goodbye. I was afraid of the end. The end of cuddling, of conversations, of hearing his voice, his laughter, his sense of humor, his very being as I knew it. It was all coming to an end. Although I knew goodbye was "just for now" - it hurts just the same.
I had weeks to prepare knowing this time would come, yet despite my preparations for this loss I was trembling in agony. Intellectually and emotionally you brace for the impact of this loss - but when it happens you realize the bracing isn't to stop the impact but to keep you from breaking apart.
I don’t know what promises Ethan made Mitch this day - but I know he will keep them. I also made promises to my son – that I would do my best to live a worthy, good life – so that I might see him again. And while I am mortal and deeply flawed, I will not stop trying. I will pick myself up when I fall and keep trying. That is my promise. I will never lose sight of my son and I will pay any price to be with him again.
As I wrote in a post earlier last year, “there is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”
I run.