About two weeks after Mitch was diagnosed with DMD we took our kids to a local theme park to try and take our minds off things. We weren't prepared for this hardship. Our legs were weak and wobbly under the crushing burden thrown on our shoulders. Our baby boy was given a death sentence and there was nothing we could do about it. I was wearing a green wrist band from the Parent Project MD who had reached out to us upon Mitchell’s diagnosis. They became my compass as we set out on a medical journey where there is no promised land, no destination – only endless seas of uncertainty and certain peril. And at some point along the journey everyone … and I mean everyone … gets swallowed up by the sea. There are no exceptions.
Little Mitch was so cute on this day. I took him on a ride that swung back and forth softly like a pendulum. It was a miniature version of those large pirate ships that swing back and forth … only this ride was engineered for little kids and it was as soothing as it was exhilarating. Mitch, being new to rides, was nervous. I reached down and lifted his little hands in the air and he giggled and giggled and resisted me for a minute. I whispered to him, “It’s okay, son, you’re safe with me.” With that, he relaxed his arms and he had such a good time. With each ride I saw his confidence grow. And my heart swelled.
I’ll never forget the feel of his little fingers gripping my hands; I loved it then, and I long for it today. As the years continued fear left Mitch and he began to seek after the rush and thrill of roller-coasters. It wasn't that he was fearless, but he learned to look fear in the eye and bravely stare back. Compared to his able-bodied siblings, Mitch has a greater appetite for BIG rides than all of us combined. The last few years I had to reach over and hold his head steady on roller-coasters because his neck muscles were getting weaker and I didn't want him to get hurt or prematurely waste his muscles. Once they go, they never come back.
“It’s okay, you’re safe with me.” I always said that to him whenever Mitch faced some unknown. He believed me, and I believed in him. The last few weeks of his life, as he sensed death circling about him, he wanted me to be by his side at all times. If I left the room, even for a moment, he became antsy and wanted me back with him. Somehow he felt safe with me and that I could protect him. I would have given my life to keep him from harm.
I always wanted to have a family; and once we started having children I began to realize they weren't the only ones growing up. My wife and I were growing up, too. Our priorities changed and their well-being was paramount. And therein lies another heavenly paradox; I know of no greater way to find yourself than to lose yourself in the service of others. And to lose yourself in the service of your child can be like having a spiritual root canal. You learn to dig deep and rid yourself of all that is wasteful, broken down and destructive and fill it with something that is pure, noble and heaven-sent.
I love this photo because it reminds me of a little boy who I miss with all of my heart – and that even though there were dark days, there were many more days filled with sunshine and happiness. As hard as things have been, I wouldn't trade this life for anything. This image also records Mitchell’s first big step into a bigger world – while I held his hands as he learned to face his fears.
There is another layer to this image that I cannot ignore. Only, in this layer I am the child and the Father of my soul is holding my hands while I grip tightly as I face my greatest fears and deepest sorrows. And when I am quite, prayerful and contemplative, I can hear the whisper “It’s okay, you’re safe with me.”
I’m learning not to flinch.
Whenever Mitch said goodbye - even if only for the day - there was always a strong subtext with him that said, “I can’t wait to see you again.” On this day Natalie was rushing our kids to school and I was able to hug them and then wave goodbye from the driveway. Mitch sat in the passenger seat and looked back at me with his little fingers pressed against the window. His loving expression said, “Dad, I can’t wait to see you again.” As our old, beat-up minivan (a vehicle that sounded like a pirate ship while turning corners and was hanging together by duct tape and a string of luck) drove down the street and out of view I realized at that moment I was so blessed … am so blessed.
I had one of those clarifying moments when you are reminded it isn't the cars we drive or the things we own that are our greatest treasures – but the little people we usher into the world; the children we create and instantly love. That is the greatest treasure of all.
This image reminds me of the importance of minding the corners of life. I wonder how many magic moments I have missed because they happened in the corner of my eye and I wasn't paying attention. But this is what I do know: if I wasn't in this moment with my son this sweet exchange could have passed me by like a speeding bullet.
A few years ago a very large fire threatened to destroy our neighborhood and home. Everyone had evacuated and I chose to stay for a while to document the impending destruction of our home. If it was going to go down, I at least wanted to take photos of it. It was about 2 AM and the fire was raging just a few hundred yards away from my property. Fire fighters were everywhere and combing my back yard to map out their defensive positions. While grateful they were toiling to protect our home, I had become numb to it all – my priorities had changed and I let go of it all.
I walked around my home and took photos of everything. I wasn't interested in our things, none of that mattered to me. Instead, I was more interested in the arrangement of our things. The pile of children’s books in our living room, night stands and drawers that were home to my children’s personal treasures, the careful arrangement of stuffed animals, toys in the bath tub, a large basket filled with Nerf guns, my daughter’s art projects at various stages of completeness – this is what I wanted to capture. I wanted to capture the corners of life we often took for granted or ignored. Suddenly they became the most interesting. Everything I shot told a story about my family and kids – and that was more valuable than the sum total of our stuff.
So on this morning, about a year after the fire, when my wife and kids were speeding off to school, I focused on the corners. And as fate would have it, out of the corner of my eye and in the corner of the car window was my sweet son saying “I can’t wait to see you again.”
With all that I am, I can’t wait to see my son again. And when I do, I will fall upon his neck and kiss him and beg him never to leave me again.
The glass between us has become opaque. And I vow to live a life that, if God allows, the veil between my son and I becomes transparent – if only for a moment – so I can say to him “I can’t wait to see you again.”
And between now and then I have my other children to love and many corners to keep.
During his final days Mitch became exceedingly weak. At night he would lie in his bed and watch his favorite shows, struggling to operate the apple remote. When it was time to go to bed he would ask me in a soft, almost breathless voice to keep the television on so his mind would not think of heavy things. As he drifted to sleep under the dim blue light of the TV, I would lay on the floor across the room watching his chest beat so hard it looked like a grown man was inside his body trying to punch his way out. My sweet son, who was tender beyond measure …. who only wanted to love and be loved, was being taken down by a mortal enemy that knew no mercy.
Sleep became a burden. Phone conversations a chore. Thoughtful visitors who knocked on our door to offer love and support became agonizing interruptions. Time was all we had left – and it was running out in a hurry. Each minute that passed was an opportunity never to be recovered. Time was coming to an end for my son … I felt it in my bones.
There were nights I wanted to wake Mitch from his sleep and spend time with him – as though he were about to embark on a long, dangerous journey from which I might never see him again. Indeed, he was embarking on the most dangerous of journeys … a journey that ends in certain death. I wanted to talk to him, hear his voice and feel his hugs and tell him again how much he was loved. But I could not bring myself to wake my son, for that would have been selfish .... he desperately needed rest and I, too, was in need of the same.
During this time my sweet wife would come to his room every two hours to administer medicine that would give our son the best shot at more time. She was exhausted beyond all description; sleep was a luxury, for there was a labor of love to be performed. I marveled at my wife as she served our son with grace, dignity and more love than I had ever seen. I remember finding her sobbing in our closet on multiple occasions with a mountain of tissues piled to what seemed the ceiling. Behind the mask of my wife’s beautiful and contagious smile was a heart that was broken and slipping into the dark abyss of pain and sorrow. Yet for our son, she hid her pain behind a smile so as not to frighten our boy.
Anguish became our tutor; and a faithful tutor she is.
Everything in the world seems easier now. Make no mistake, the pain of this loss is as tender as the day we lost him, perhaps even more so. But everything else seems less heavy.
Among the many lessons I have learned from my son, I have come to know that the loss of a child is like watching a horror show that knows no equal. And while you can’t change the channel, you can control the volume.
Since the loss of my son the volume of the world has been turned down significantly. Things that might have caused stress or an emotional reaction are almost muted to silence. A chaotic and fractured world that screams with all its sound and fury to capture my attention has now become static interference far in the distance.
Clarity has come. And it is that clarity I shall keep.
Marlie had such a tender relationship with Mitch. It was as if she knew he was sick and cuddled with him whenever possible, contrary to puppy instincts which would have had her running around instead. Yesterday marked 6 months since our son’s passing … and when we arrived at the cemetery Marlie was so .... different. Almost reverent. Our hearts were quiet ... and grateful.
In February, when Marlie visited him at the hospital she was much, much smaller and would wiggle her baby tail, wobble up to him and kiss his smiling face and then lay right next to him. Mitch would then play with her little paws, tickle her tummy and talk to her softly. He loved this puppy – and she seemed to love him.
On the night of his passing Marlie was especially tender with Mitch. By that evening he couldn’t open his eyes but could squeeze our hands gently to let us know he heard our words. Marlie would lay under one of his hands while he would softly move his fingers as if to pet her. I was so moved by that sweet exchange I turned my camera to them and filmed it. It would only take a few seconds watching that before my eyes became engulfed with tears.
While Mitch was slipping deeper and deeper into the abyss he seemed to find comfort that she was near him – and she never left his side. By the time he passed away, Marlie had crawled to his pillow and curled around his head. I have photos of this, too. It is tender beyond description and still very hard for me to look at. I wonder if Marlie sensed he was slipping away and went to his head to comfort him. I would like to think so …
What I do know is there were things unspoken between them that said more than words can ever say; and it was curious to see. This little dog, Mitchell’s loyal companion, would have done anything to make him happy and seemed to know just how to comfort him as long as they had each other.
Marlie is full-grown now and Mitch would have loved to see what she looks like. He always called her his little Polar Bear.
As hard as it is to keep and care for a pet, when I stop and think about the economy of it all, it would seem they pay us back in spades.
Tender mercy #1,002.