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 didn't know it, but this was Mitchell’s last summer. As much as he enjoyed giant roller coasters, Mitch sometimes opted for the smaller ones so he could rest a little. Because generalized muscle weakness was settling in, riding the bigger coasters was hard for him. And, whenever he went on a big one, I would sit next to him, reach over and hold his head steady and do for him what his neck muscles no longer could. Mitch loved the thrill of rides.

On this occasion, Mitch and his brother Ethan were taking a ride on a much smaller roller coaster. I sat outside the perimeter and took photos with my larger lens. Though I was a distance away, it was almost as though I were sitting next to them. I have a bunch of photos from this series, each photo revealing different expressions of thrill, laughter, and surprise. 

With a rush of wind, the caterpillar shaped ride whipped by me at lightning speed – offering brief relief from the heat of the summer sun. Each time they passed where I was standing Mitch would make very deliberate eye contact with me and smile. I would always smile back as though to say, “I love you, son.” 

On this particular ride, I asked Mitch why he and Ethan closed their eyes. Mitch said he wanted to know if the ride would be different if he couldn't see. He said with great enthusiasm, “It worked! It was so fun. It was like a totally different ride.”

I love this photo on so many levels. I see two young brothers that loved each other with all of their hearts. Neither of them were peeking, but instead honorably doing what they agreed to do: experience the ride without sight. How easy it would have been to cheat and crack their eyes open a little, but as far as I can tell, they didn't. And what I know of these boys, they wouldn't. That is just like them: honest and true, through and through.

I am sure their memory of this experience may have faded quickly from their young minds, but I haven’t forgotten this moment. And at the time, I couldn't stop thinking about it. I thought to myself, “Perhaps little Mitch was on to something. How often do I go through life relying solely on the things that are plain to see? Perhaps, when I do, I’m cheating myself from life’s deeper mysteries.” I’ve always tried to look at life through spiritual eyes, but I’m still human and sometimes I forget.

This much I do know … when I look at my life with mortal eyes, I see sorrow and loss much differently … painfully. But when I close my lids, and listen with my soul to that quiet, heavenly bid, I know there’s more to life that I can possibly see. I am grateful for a loving Father who patiently waits as I learn to see things differently.

Who would have thought, two young boys on a rickety roller coaster ride would accidentally teach me something about seeing with my spiritual eyes? 

I am human. I am still blind. But more and more, I’m learning to see with my spiritual mind.

One day, when I truly have eyes to see, my heart won’t carry that constant ache that hurts so terribly. In fact, my mind and heart will see things so differently. For, all my pain will have been traded for spiritual gain. Then, with tears in my eyes, I will see my boy so differently. I was never really teaching him, you see, for he was teaching me.

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After little Mitch realized his hand was going to be okay his mother picked him up and held him as only a mother knows to hold her child. To a young one, there is a certain comfort that comes from blankets and Sippy Cups, but then there’s the comfort that comes from a mother; and no blanket on earth can replace the warm embrace of a loving mother.

Though not an envious man, I am sometimes sorely tempted, when I see the tender bond between mother and child. Though my heart loves deeply, I recognize there is a sacred place for a mother’s love. I wish I had a piece of that because it is beautiful beyond measure. Instead, I’ll take what I can get while sitting on the sidelines and consider myself blessed. 

So there I stood, in my dorky way, trying to comfort my son. I didn't stand a chance against the blanket and Sippy Cup, let alone his mommy’s embrace. I made funny faces and danced like a fool for him and he started to chuckle. His smile, this very smile you see here, and eyes shrunk-wrapped in tears melted my heart. Though I offered a little sideshow entertainment for my boy, the real performance was already underway by his mother.

I think, on some level, I’m beginning to understand Kate Bush’s lyrics “I stand outside this woman’s work … this woman’s world. Ooh, its hard on the man, now his part is over, now starts the craft of the Father.” There is a sacredness to motherhood … something far beyond my reach. Though I do my best to be a good dad and husband, I am beginning to realize I am a small player on a much grander stage. However much I do my part, it is minor by comparison.

Neal Maxwell wrote, “When the real history of mankind is fully disclosed, will it feature the echoes of gunfire or the shaping sound of lullabies? The great armistices made by military men or the peacemaking of women in homes and in neighborhoods? Will what happened in cradles and kitchens prove to be more controlling than what happened in congresses? When the surf of the centuries has made the great pyramids so much sand, the everlasting family will still be standing…” 

When we started our family we had no idea what we were doing. We still don’t on some level because each phase of child-rearing, at least for us, is undiscovered country. Yet we’re learning things each day that we try to apply in the things we do and say. I wish I could wield the parenting power my wife seems to shoulder so gracefully. Such is the power of motherhood, I suppose. I’m just an ordinary dad with more weaknesses than most. So I’ll just try to pave the way, moving obstacles where I can and make life a little easier for her each day. 

Our journey of grief, like everyone who hurts, is painfully unique. It’s a delicate balance of looking forward to sights unseen, while giving myself permission to hurt because I’m still a human being. That’s the thing nobody told me … healing hurts. 

Though I’m still hurting, I’m also healing … and that is a wonderful, wonderful feeling.