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Last September Mitchell’s Aunt Sonya, who had become almost a second mother to him, got married. Up to this point, her personal and professional life was more than coincidence – it was nothing short of providential. I will write of that another day. 

Emotions were especially tender this wedding day because a very special boy was absent. Though I was happy to be with family and I loved then so, my heart was quietly searching for the one who was missing. Though my mind knows where he is, my heart will ever search for him. I remember being on the verge of tears the entire day and I felt like the slightest bump or pebble would break the emotional dam holding back a flood of painful emotions. There were times I had to excuse myself to let the tears flow. 

As the wedding photos were being taken I noticed Sonya wearing a special gift given to our family by Cathy O’Grady, perhaps one of the most charitable and loving people I have ever met. She had been following our son’s story and felt moved to make some pendants in honor of our fallen son; a gift for which we are forever grateful. Cathy, having been touched by Mitchell’s Journey dedicated the sale of her pendants to the fight against Duchenne Muscular Dystrophy – my son’s killer.

The wedding photographer, knowing our family’s loss and Sonya’s tender relationship with Mitch, took special photos of Sonya and her pendant. While these two photos are not mine, I love them because they remind me to be grateful for the gift givers of the world. When I look at these photos I see many gifts and my heart swells with gratitude.
 

• I see my son, though a source of deep love and great agony, Mitch was a gift to me.
• I see Sonya, a gift to our family and son from a loving Father who knew we needed and angel, and sent us one.
• I see Cathy O’Grady, once a stranger, now a friend, the most loving of Samaritans.
• I see the hand of my Father, who is gentle and wise … patiently teaching me to open my eyes.

I am grateful.

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When night came my wife and I would try to get a little rest in a small corner of the CICU room. On a bench barely made for one, we somehow managed to share it and lay our weary heads together hoping to find energy to fight another day. 

This was what I saw each night from my pillow. The florescent lights from outside shone through the glass doors and paper-thin curtains like the punishing noon sun – as if to taunt my fatigue. On top of that, alarms were constantly sounding alerting nurses of the disaster that was unfolding in my son’s body. 

Unable to find rest, I would often sit in a chair beside Mitch and hold his tender hand while he slept. Quietly I wept. As I've noted in earlier posts, his heart was pounding so violently it seemed as though a grown man were in his chest trying to punch his way out. I thought to myself, “How could this be? Here is a little boy who has a mind to hurt no one – but is being mortally wounded by an invisible enemy. How could this be?” There are answers – but often, in our sorrows, they are not as forthcoming. 

It was hard to find rest at the hospital because everything reminded me of the violent battle that was taking place under the surface of my son’s skin. While doctors were doing all they could to keep death at bay just a little longer, everything reminded me Mitch wasn't on borrowed time, but at the end of time. Each night I would sit by my tender son and weep a little more than the night before. Each night I found myself more weary and very much in need of rest.

Finally, after having exhausted every medical avenue we knew at the time, we were home. No longer smothered by the constant reminders my son was dying … no more alarms, no more displays showing his schizophrenic heart rate … we were home and focusing on the other heart, the one that loved. At least at this moment I understood how ignorance could indeed be bliss. We did exactly as the cardiologist suggested as he choked back his own tears, “Take him home and love him with everything you've got.”

While travelling through the wilderness of grief I have discovered sleep a strange bedfellow. On days the gravity of grief is particularly heavy, sleep is a welcomed break from the sorrows of the world. Sometimes night can’t come fast enough – for I know I will find rest. 

Yet there is a place that terrifies me … it is the transition on either side of sleep. Most nights [or mornings] I consider myself lucky if I slip from one state to the other quickly. But if I spend any time at all in that place of transition, somewhere between sleep and consciousness, I experience the horror of losing my son as though it just happened. Those moments are terrifying beyond description. They break my already broken heart, all over again. I wish these moments didn't happen. But they do. And I cry out to my Father, that my weary soul might find rest. I don’t know if those streaks of panic and horror will ever stop. I pray they do.

But if not, I will bear that burden with a glad heart. For I know in my sorrows I am learning; and though my hands tremble and soul shakes, I will take these lessons patiently. 

One day I will see my deepest sorrows transformed into the sweetest glee.

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There is a saying that reads, “Do not teach your child to be rich. Teach him to be happy. So when he grows up, he’ll know the value of things, not the price.” I always loved this saying for many reasons and have tried to help my children appreciate the little things: soft pillows, macaroni and cheese, and blanket forts. After all, true value has little (if anything) to do with price –and the things of greatest value cannot be purchased with money. Not at any price.

During his last summer of life, Mitch spent some long-awaited time at his grandmother’s ranch in Southern Utah. On this day life couldn't have been more awesome; the weather was perfect and glee was floating in the air like spring pollen. In the horizon you could see the ancient fingers of Kolob Canyon which stood towering into the sky as a majestic reminder that our lives are but a blink and humans are only transients on this planet … this classroom of rock and water. 

Before my mother moved to her ranch I drove by this canyon a thousand times, oblivious to the true beauty of the landscape I was passing. The highway hugs the mountain range and base of Kolob Canyon in such a way you cannot see it (not even a little bit) because the road is too close to it. Without the proper perspective, everything feels ordinary. But, if you take an exit near the canyon and get a little distance from the highway, you will see the most amazing mountain range. This canyon is one of Utah’s best kept secrets – invisible to the casual traveler.

Once I discovered this, the relationship between the highway and this canyon began to serve as something of a metaphor to me – a reminder that sometimes I can’t see a thing until I step back and look from a different vantage point. 

My experience with Mitch taught me the same thing. As I travel the long road of grief, when I step away from my sorrow and look upon the landscape of this experience from a different vantage point, I see beauty. I also see reminders this place is not home … that I, too, am a transient and will one day travel to a better place. 

I love this photo because it reminds me Mitch lived a good life. If there were one image that best illustrated my son, this is it. Mitch was happy – not because of things, but because he was loved by his family and he discovered ways to find joy in everything. I have recently discovered many videos of my family where you can see Mitch skipping in the background (unaware he was on camera) because he was simply happy. Although the road he traveled was hard, and he could have found a million-and-one reasons to complain about life not being fair to him, he always stepped away from his limitations and appreciated life from a different vantage point. He saw the canyon. 

While having lost my son has been a source of great sorrow, he is also a great source of inspiration to me. And though I walk imperfectly, I will learn from my little boy. Like Mitch, I will find a reason for glee. For indeed, as I step away and look upon my life differently, I can clearly see there is beauty all around me.

Thank you Mitchie, for teaching me to be happy – to always find a reason for glee.

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