GRATITUDE IS GREATER

I'll always remember how difficult it was for Mitch to bend over and gather leaves. Sometimes he would lose his balance, fall to the ground, then struggle to stand up again. His muscles were wasting away and I was powerless to stop it. As his friends were getting stronger, he was getting weaker. I began to see how often I took for granted what he struggled so hard to enjoy. I never imagined the gentle teacher I discovered in my little boy.

Gratitude is not only the greatest virtue but it is the parent of all others.
— Marcus Tullius Cicero

I remember asking, “Mitch, can I help you gather leaves?” Mitch said quietly, “No, it’s okay, Dad. I want to do it myself.” As I sat and watched my boy struggle, I fought back the tears and said a prayer in my heart that heaven might save my son from certain death – for he was a good soul and the world needed more people like him. Heaven saw things differently and took my boy away – for there was work to do, I suppose, in places I cannot say.

The ancient Roman philosopher Cicero once observed, “Gratitude is not only the greatest virtue but it is the parent of all others.” Among this little boy’s virtues, gratitude was chief among them … for he never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it.

Mitch taught me gratitude is always greater.

 

 

UNEXPECTED

 
 

I stumbled onto a 2011 Thanksgiving photo of Mitch late last night and sent a copy of it to Natalie this morning. Our exchange, a brief yet tender one.

At least for me, grief isn't about being in misery. Instead, it's a state of longing and wanting our loved ones back. It's a longing so deep your knees shake, hands tremble, and eyes suddenly fill with tears. Grief lingers like a silent shadow - ever close, always near ... its weight undiminished by the passing of years.

USUALLY MORE THAN ONE*

When I close my eyes and think back on this moment, I can still smell that faint, earthy whisper of fallen leaves as my boys wrestled in a freshly gathered pile. The ruffles and crunches, blended with the giggles of my boys still play in my ears as though it just happened. “Hey, Effie, let’s throw leaves in the air again”, Mitch prodded his older brother. “We can pretend we’re in Lord of the Rings or something.” Ethan, not knowing what little Mitch meant, reached down and began to gather leaves in his arms. Mitch, eager to make believe, already had his armful.

I laid on the ground quietly and took photos from the perspective of a field mouse, looking up at my little boys who had a giant imagination. I loved this moment and the moment immediately after this photo was taken when the sky was filled with golden snowflakes made high by little boys who loved to play.

I recently stumbled across this quote: “Isn’t it strange how autumn is beautiful, yet everything is dying?” I love this quote, not just for the arrangement of words, but for the meaning it conveys. I have discovered that beauty can be found in almost anything if we look for it.

To be clear, seeing my son slowly die was not beautiful – in fact, it was a horror show that broke my heart and soul. Yet, when I look back on the tender mercies we received during that time from a loving Father, I know we are we are not alone. I know that heaven walks before us and prepares the way for all that we experience. The truth is, we are rarely spared suffering, but we can be given comfort in times of need … and there is a certain beauty in that.

For every difficult thing I’ve experienced, I’ve learned something about its counterpart. Poverty has taught me the value of a penny; suffering the splendor of peace. Death has taught me to appreciate life; grief has shown me the value of time.

When the skies darken and I'm tempted to give up, I stop and count my blessings ... I name them one-by-one. For every negative, I have discovered a positive – and usually more than one. It is humbling to see all that God has done - not just for me, but my precious little son.

 

ON GRATITUDE

We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs. 

Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.

He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life." 

I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.

I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong. 
Whatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.

He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see will come from the light within.

Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.

TRANSFORMATIONS (Part II)

Several months before Mitch passed away a friend and colleague handed me a metal coin he created for one of his businesses. On the face of it was etched a butterfly and the word transformations. He gave it to his clients as a token and reminder of what we are meant to become, something far greater than we currently are. This good man, who has faced incredible difficulties of his own, learned to channel his own disappointment and sorrow into love and the service of others. I admire him greatly.

On this afternoon we took Mitch and the kids to the mountains where we would take our second-to-last family photo. Had I known what little time was left, I would have asked Natalie if we could take turns driving so we could each cuddle with our son. 

We found ourselves at our destination surrounded by a forest whose colors, save a few patches, were nearly gone. Mitch and the kids scooted down old wood trail across the marshland. I reached into my pocket and discovered the coin my friend gave me, which I mistakenly thought I left on my office desk. As I held it I couldn't help but take a photo of it and contemplate the process of transformation. Soon, I would find myself wrapped in a cocoon of grief, wondering if all was lost and if life would ever be worth living again. Such is the sorrow of losing a child.

I really don’t know much about grief, but I’m learning a little each day, and each day I experience a little more of a transformation. I used to write of my journey THROUGH grief, as though somewhere a great way off, there would be an end to it. Any more, I write of my journey WITH grief. For as far as I can tell, grief will be my companion so long as I live on this earth. Such, also, is the sorrow of losing a child.

There was no way of knowing what would happen when I started Mitchell’s Journey. Like a camping tent, I set it up with the intent to eventually take it down. I don’t think I can do that now. Mitchell’s Journey has transformed into something I’m still trying to understand. 

I will still write of hard things because hard things happened. I will share hard stories because I don’t want anyone to ever confuse DMD as an inconvenient journey. Duchenne Muscular Dystrophy is a fatal journey. 100% catastrophically fatal. Not one can escape it.

I recognize, also, the exhausting toll such stories can take. So, I am also going to write of the transformation I’m experiencing and the hope and happiness I feel in my heart. Today I feel as much joy in my heart as I do sorrow, which thing I never imagined nor ever quite supposed. The journey of grief has taken me places I never had a mind to go.

To those who are stumbling deep in the wilderness of grief, I want you to know there is eventually peace. It will never stay, not like it did before, but you will appreciate it when peace comes to you more and more. The road is long and skies sometimes dark and bleak, trust me when I tell you … somewhere out there, on your own journey, is happiness and peace. Just keep moving forward at your own steady pace and remember the journey of grief is not a race.

One day, perhaps at our journey’s end, we will look back on our broken paths and marvel at where we've been. I wonder if the parts of us we thought were so broken will be the very thing that transforms us like the promise of this token.

A MEASURE OF LOVE

We decided to take our kids up Big Cottonwood Canyon (near Park City, Utah) before the snow came. 

The leaves had fallen and covered the ground like crunchy wrapping paper on Christmas morning. Nature’s blush was fading fast and all the world was about to fall into a wintry slumber. Because the ground hadn’t frozen yet, you could smell the dirt, pine and leaves like a sweet potpourri made by the loving hands of Mother Nature. 

Mitch loved smells and breathed in deeply with his nose and said, “Dad, doesn't it smell good outside?” I smiled softly at him and said, “Yes, son, isn't earth awesome?” He smiled back at me then a little while later took another big whiff of Mother Nature’s perfume. I couldn't help but notice how Mitch kept stopping to smell the air again and again. It was almost as though, without knowing it, deep down he knew this was his last chance to drink the season in. 

This was his last outdoor adventure before it snowed. 

We were high in the mountains, parked next to a natural marshland. Wooden walkways carved a path through some of the marsh, then to a dirt trail that circled a small lake. Mitch loved going here because he could see ducks, fish and all manner of wildlife. At one point Ethan and Mitch raced ahead to explore like young boys love to do. I took this photo of them peering over the edge of the walkway at some fish swimming near the surface in hopes of something to eat before the water froze. 

Because DMD had weakened his muscles, Mitch couldn't walk long distances and used a scooter to get around. Ethan was always careful to make sure he never left Mitch behind. That simple gesture to wait for those who struggle to keep up; that is a measure of love and charity in my book. When I saw this quiet, unrehearsed act of love I wondered how often I had left others behind: others that could have used loving encouragement, a helping hand or a shoulder to lean on. There before me were two young boys unaware of the lesson they just taught me. They were just simply being young. They were just being good.

Mitch seemed to always care for others, too, and was mindful of those left behind. One Sunday, as the kids were getting ready for church Natalie noticed an extra set of scriptures in Mitchell’s bag. When asked about it Mitch said, “Oh, mom, those are for Luke because he sometimes forgets to bring his own.” Little Mitch didn't want his friend to be left behind or feel left out; he was naturally his brother’s keeper. When Natalie first told me that story I wept tears of love and gratitude. Not all tears are sad … some come from another place that make your heart feel glad.

I learned something this day I will not soon forget … 

A measure of love is looking back to see who you can help. It is the deepest form of charity because it requires you to forget yourself. The funny thing about what it means to love and lift another, you never lose ground when you reach down to help a sister or a brother. In a world saturated with fear and hate we ought not throw sharp stones, but rather find those who are heavy hearted and seek to mend their bones. A strange thing indeed, the paradox of love … you cannot give it freely and not feel closer to heaven above. Looking back and helping others, that is a measure of love.

Mitch has gone far beyond … where mortal eyes can’t see. Though I stumble forward, trembling with grief and feeble knees, I sense somehow that he is helping me. Perhaps one day, when all is said and done, we'll see there was an unseen army helping us, when we felt like only one.

After all, isn't that how things in heaven are done? Its not so much about the 99, but rather looking back to find the one. 

A beautiful measure of love, if I ever heard one.

MITCHELL’S JOURNEY DOCUMENTARY

Last night Natalie and I participated in the final leg of a short documentary that is being produced about Mitchell’s Journey. It will air in October and I’ll be sure to post a link to it on this page.

A few months ago I received a message from Candice Madsen who is a producer for KSL, the same news group and producer that aired stories about Mitch while he was still with us. She wanted to see how we felt about them telling more about Mitchell’s Journey and the effect it has had on others. We were so humbled by their request – and because we trust them we gave them permission. Since then they have flown around the United States and interviewed some people who have been touched on some level. 

At some point during the interview I was taking snaps with my iPhone and everyone started to laugh and take pictures at the same time. It is my deep belief one can never take too many photos. This was the photo Candice took while Natalie and I were being interviewed by Brooke Walker, a co-host to Studio 5 and the narrator to the Mitchell’s Journey piece. She was also so loving and kind.

Although we have had little to do with the production of this documentary, save pointing the producers to a few followers, participating on some level has been a tender and humbling experience. Listening to my wife talk about Mitch and our family and her philosophy on life reminded me why I fell so in love with her many years ago. 

I sure love my wife and I want to be more like her. She is so loving and kind, wise and thoughtful. I am so grateful that she puts up with me and I hope at the end of my days, when I am old and about to see my son again, that I can look into my wife’s eyes and know I did my very best to love and serve her. For the best way to honor my son is to love his mother … and love her, I do.