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.