A few weeks ago we had our annual Cousins Camp; a family reunion-style gathering dedicated to the cousins in the family. The evening of the camp, just before the opening ceremony, I was asked to take some photos of the group and individual families. I remember taking this photo of my wife and kids with a quiet lump in my throat. The lump was part love and part longing. I adore my family, my tribe, but I also wanted my little boy to be in this photo, too. 

I shared this photo with my wife (and another photo with me in it) and she said, “I love these … but they feel incomplete. Our family photos will always feel incomplete.” I knew exactly what my dear wife was saying. Together, our hearts sank a little on the outside, and a lot on the inside. 

This grief journey has been most surprising. I was recently in a room where a man described how he used to teach others how to deal with hard things. He was a motivational speaker who had read a great many books on life and how to master it. He had all the right soundbites arranged in the perfect order – like chairs to a royal wedding. By all accounts, he had mastered the craft of publically motivating others through toils of life. For everything he seemed to have a bold answer. Yet, there he sat, sobbing and trembling over a personal catastrophe – which hardship was significant. My heart went out to him and I prayed in my heart that his back would be made strong so that he might carry his burdens with ease. I cared about his sorrows and felt great empathy for him.

This wasn’t the first time I have heard an expert lament that to talk about a thing and experience it are two entirely different things. It occurred to me that evening, with great clarity, that all of the soundbites, books, motivational talks, and seminars will never teach us what experience teaches us. I’m grateful, however much it pains me at times, that our Father knows this and allows us to grow by experience. 

There are other aspects of my grief journey that have surprised me. For example, I never imagined there would come a day I wouldn’t weep. For a little over two years I wept every single day. Every single one. For two years it felt like an elephant was standing on my chest and breathing was difficult. To my surprise, at least for now, I feel like my grief has evolved. I weep – but not every day. I still think about little Mitch – a thousand and one times a day. But I don’t always weep. Maybe this is just a phase and the hard stuff will return – but I don’t think so. What was once painful agony has turned into deep longing – there is still a measure of agony … but it isn’t what it used to be. I miss little Mitch in ways that are difficult to describe. I miss his humor, sweetness and love. I yearn for his company in a most curious way – and I hope to describe it one day.

Other surprises along this grief journey have been to see how some people can be so callused and uncaring, while others are vile and seem to foam at the mouth as they share their own hate toward me and my family. They seem to go out of their way to try and hurt us; but we ignore them – for with each effort they grow ever smaller and weaker. 

So this year’s Cousin’s Camp theme “Have Courage & Be Kind” seems especially fitting. I will not shrink by the smallness of others. I’ll keep writing of my little boy because I love him and miss him deeply. I’ll try to help others become aware of DMD and its fatal outcomes. I’ll always look heavenward. I may stumble from time-to-time, I will always look up. And though I am human … riddled with weakness and prone to mistakes … I love my Father and all of his children try to see everyone as He sees them. 

Most of all, I love these 4 people and 1 little boy … a little boy who is waiting somewhere in that place beyond the hills. I yearn to be there with him – but it is my duty as husband and father to help my family get there. When my son first died, part of me wanted to die; to escape a suffering I never imagined would be so dark and deep. Nothing was so alluring as those dark woods and that eternal sleep.

But death and reunion can wait – for there is a work to do before I die, when the hour will draw too late. And when that time comes I hope to see my Brother and my Son. I will fall to my knees, eyes bathed in tears, and hope my work was done.