The day was drawing to a close as we left a neighborhood park. We had packed our things and headed home to have an evening BBQ in our back yard. As we started our way up the grassy hill I took this photo of Mitch. To the left of this image (out of view) is a hill with a paved path that is the way home. But to get there Mitch had to drive to the street, turn left, and then backtrack on a different sidewalk to the path that would lead him home. We never left Mitch behind and he was always accompanied by at least one of us. But on this occasion Mitch wanted to jump-start his commute and got ahead of us. My heart went out to my son because even though we were there for him in every way we could think, in many ways he remained alone.

Everywhere we went Mitch had to take the long road. Circumstance often required him to leave the crowd and sometimes go great distances in order to navigate his scooter and go where his friends went. For him the party was always “over there” and sometimes he would miss out because of the time it took to get places. But Mitch always smiled and tried to make the most of what he could do. Yet, deep inside and rarely voiced, he longed to be like other boys and do what they did with ease. 

On one occasion, while attending a week-long MDA camp, Mitch saw a young man with DMD on a ventilator and said to his Aunt, “I’m the lucky one.” Sonya, his aunt and second mother, held back her tears knowing the time would come that Mitch, too, would need breathing assistance. The road ahead for Mitch, if left uninterrupted, was longer than he knew. But he was too young to carry a knowledge of such heavy things, so she kissed his forehead with a soft smile and said “I love you.” 

“I’m the lucky one” … I suppose in a manner of speaking he was. Luck, after all, is relative. At least for Mitch the world he had grown to love would soon be taken from him piece by agonizing piece. With the passing of each year Mitch was on course to lose muscle strength until he would no longer be able to use his arms, neck, breathe, eat or swallow. This little boy who loved to wrestle, explore the outdoors, dance and use his body to drink life in was soon going to face some horrible, paralyzing realities. And though it pains me to think it, at least for him, perhaps he was the lucky one. 

I remember the night I wrote my family about Mitchell’s diagnosis in 2005. He was only three at the time. I described how the road ahead for our son would be long and eventually he would go places we could not follow. Though we would be beside him, kissing him, loving him and cheering him on … the road Mitch was to travel was his, and his alone. 

I knew back then I could not trade my muscles for his and give him my strength – though the lion in my soul desperately wanted to. I could not give Mitch my heart so he could live – though the broken daddy in me would have done anything to trade places with him. Like the ticking of a clock that keeps me awake when I desperately seek rest, every beat of my own heart reminds me I could not save him … and that breaks my heart. 

When we started out on this journey I thought my son’s road would be longer … and I am pained that it was not. Where Mitchell’s road ended mine continues – and the road before me seems to stretch out as far as my mortal eyes can see. This path, this long road of grief and sorrow is perilous and difficult to navigate; but forward I go. Forward I must.

This experience has taught me in new ways that suffering is singular. Surely there are shared sorrows and there is comfort to be had in mourning with those that mourn … but at the end of the day, we must learn to cope with sorrow, disappointment and hardships on our own. We can help each other along the way, but nobody can do that work for us … and that is the long road, the work we must do alone. But alas, we are never truly alone … there is help from that place beyond the hills … even blessings unseen. 

So as I travel the long road of grief I will remember my son’s words “I’m the lucky one” and count myself lucky beyond measure he was my son. And when I encounter others who travel this, or other long roads, I will stop and honor their struggle and I will love them. Perhaps together, for a moment, we can find rest … knowing full-well the road before each of us, however long and hard, will be for the best.