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.