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Two little women who completely stole my heart.
And thus began our family and our journey we did start.

Happy Valentine's Day!

When I peer out my window
There’s so much to see.
My eyes and heart, overflowing
At all the things of beauty.

But when I see my wife and kids
My soul begins to sing,
For they are all I've ever wanted,
I am richer than the richest king.

Though I ache to see my son,
To hold and kiss his face,
I know that I will see him again
In that other place.

The time will come, to see my son.
Of that I’m sure.
For I have heard a quiet whisper,
Spoken without a word.

Thank you, little boy,
For teaching me to see.
To look far past my grief and sorrow,
And appreciate life’s great beauty.

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Each year Mitch was invited to go to the mobility lab at Shriners Hospital where technicians would attach sensors to his body and, with the help of sophisticated computers and cameras, model his mobility and muscle decline. I was always there to document the experience. While doctors were capturing his muscle movements, I was there to capture his beautiful, tender soul. Most importantly, I wanted my son to know how much I cared about him. I never wanted him to turn around and see a cold, empty chair where I should have been. I did my best to cheer him on until the very end. Although his body was getting weaker with each visit, I saw his countenance and kindness grow ever stronger. Sometimes the strongest angels have broken wings.

In this photo Mitchell’s Aunt Sonya, a pediatric physical therapist at Shriners, ran with Mitch and turned what might be a scary experience into something fun for him. She was a special tender mercy to our family. She loved little Mitch with all of her heart, and he loved her like a second mother. Sometimes guardian angels blend in with the rest of us.

Mitch smiled as he faithfully completed each task. With each routine doctors had him perform, their computer models of our son began to replay his movements with incredible detail. On their screen was a wireframe of a person walking, jumping, or standing up from the floor exactly as Mitch did moments prior. The same technology to capture body movements for movies and video games was being employed for medical purposes and Mitch thought it was fascinating.

What might have been a trivial set of routines for a healthy child was much more difficult for Mitch and he always left the hospital exhausted. One of the early challenges DMD parents’ face, while their children can still walk, is hearing comments from people who seem dismissive and comment on our child’s large calf muscles. “Look how strong his legs are!” they say with a slap on your back, “You guys are going to be fine” not realizing what looks like muscle is actually scar tissue. The truth is, the stronger (bigger) their legs look, paradoxically, the weaker they are. Thus enters the very real feeling of being misunderstood and further isolated from the world. 

Gathering mobility data from Mitch was not only important for tracking his own health, we felt a responsibility to the DMD community at large, to contribute whatever we could to a much needed body of knowledge. We were just a tiny, invisible family and what little we could offer, we gladly handed over.

As we left the hospital I began to think deeply about our experience that day. I wondered what would happen if we applied as much effort to examine our inner selves as we do our outer selves. It is so much easier to observe and tend to broken bodies, than tend to broken souls. 

So, when I stumbled across this image early this morning, I immediately wept for my son. I saw my little boy who loved his life, and suddenly it was done. I then renewed my promise, to my Father and my son, to live a life examined and to love everyone. 

Yes, there are broken things to mend and I am sure to stumble a million-and-one times … times ten. It won't be easy … in fact, I know it will be hard. And when I reach the finish line, I am sure to have some scars. But all of that will be a small price to pay, including grief and pain, for those are the things worth examining from which we stand to gain.

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We had just finished speaking at our son’s funeral and my little boy’s body was rolled to the vehicle that would lead us on the longest, slowest, most painful drive of our lives. 

It had only been an hour since I saw my son and the funeral director closed the casket, never to be reopened again. I longed so deeply to rescue my tired son from the cold.

There were so many layers to grief this day. Grief weighed heavy because I lost my son, who was in so many ways my best little friend. My grief was compounded because my wife, who has the most gentle and tenderhearted soul I have ever known, ached in ways I cannot comprehend. I grieved for her … for a mother’s love is unique … a mother’s love is deeper than deep. However much I was pained by the death of our son, I know this good mother ached infinitely more. I also grieved for my fallen son, who wanted so much to live but whose life was cut short. I grieved for my other children who, confused and full of sorrow, lost a dear brother they adored. 

As I looked at my wife, she seemed to stare into the horizon as if to wonder how life could possibly continue. In my heart, I felt that way, too. Ethan stood stoic, peering into the back of the hearse at his younger brother, his best friend, trying to make sense of loss. 

If ever I was tempted to feel like an utter failure, this day only amplified that. The days and months ahead would grow dark with grief. The pitch of night would, by comparison, seem light. 

All the provincial things I thought weighed heavy on my shoulders suddenly seemed light as a feather. Crushed by the gravity of grief, I found myself stumbling over pebbles and gasping for breath. There were days that would follow I even wished for death.

Grief? Grief is just a flimsy word to describe the unimaginable. The indescribable. Grief is a pebble of a word, a grain of sand, even … hewn from the mighty Everest of sorrow. It points to a pain that simply defies words. 

Ever since we lost little Mitch I have spent a great deal of time contemplating the wages of grief. At first, it felt like the wages of grief were only hopelessness and deep, dark sorrow. One can’t help but ask themselves “why my child?”, “why not me instead?”, “why in the first place?” The question I hear most often is “Why would a loving Father allow us to hurt so much?” I suppose we may never know (at least in this life) why some are required to suffer greatly while others are not. One thing I do know, for certain, is our Father loves us, and He loves us a whole lot. I know because I have felt it all along our journey, even deep in my wilderness of grief. In the darkest corners of my soul, He has offered me hope and peace.

The wages of grief are not always easy to see – especially when our vision is smeared by tears, pain and misery. Though painful beyond belief, grief is teaching me things I would have never learned in comfort and relief. Painfully, it is shaping me, and with heaven’s help it is not breaking me. And with each tear I shed, I am beginning to see things differently.

I still wrestle with grief every single day, but I am learning to carry my sorrows in a different way. Deep in the wilderness of grief I may be tempted to feel forsaken and alone … but when I quiet my soul and listen, I hear my Father and my little son leading me home. 

Leading me home.