I remember the muffled whispers from these two young boys as they negotiated an imaginary scene. Little Mitch and Ethan were hard at work making a movie in their minds. Their dimpled hands moved little toy figures from one place to another over an ever-changing landscape of cloth and couch pillows.
The child in my heart wanted to join them in the action – but I knew this was their time to bond, so I refrained and just watched these sweet boys from a distance do what they do best: imagine. “Petcheew, petcheew”, Ethan sounded with great energy. Mitch replied, “Aaaaahhhhh” as his chubby fingers escorted a little Star Wars figure from the air into a carpety ocean. Their imaginary tale continued for another 20 minutes. Quietly I sat with a smile on my face and an even bigger smile in my heart. I didn’t just see two little boys playing … I saw how much they loved each other and that filled my heart with the deepest joy.
Every single day these little boys created a storybook of adventure. Each page written moment-by-moment, sometimes with great brilliance. Furniture turned into vast mountain ranges, carpet into deep valleys. Our little home became an infinite universe of endless wonders.
Sometimes I wish I invested more energy in playing with my children when they were young. I tried, but looking back, I could have done better. I should have done better. But I suppose that is the lament of every parent. Maybe that is why grandparents are so great at what they do … because they finally learned that nothing is more important than the time we spend with family. They are less concerned with accumulating things and seem to be more interested in making moments – because by comparison, they don’t have many moments left.
Several years ago, about two years before Mitch was diagnosed with DMD, I sat at the kitchen table of a woman whom I just met. I had flown to Arizona to document some of her life story. Her name is Anita Farnsworth. A more lovely and kind person I have never met. I consider her a dear friend to this day.
She described in a most beautiful way her love of family. She has 14 children and more grand & great grandchildren than I can count. If I were to tell you the number, you might think I exaggerate. I carefully placed a microphone on her kitchen table and asked her to just talk to me. Soon I was swept away with her story as images from her words flooded my mind.
I asked her what it meant to be a mother. She said her first delivery was very difficult … and just after her delivery someone asked if she was going to have another, she said, “I don’t know why anyone would have more than one.” With a chuckle in her voice and a glowing smile on her face, she then said with tears in her eyes, “But then, I forgot about all of that. Why cut yourself short on blessings. [With children] there is so much love.” By the end of her beautiful characterization of motherhood, my eyes were overflowing with tears, overwhelmed by the truth of her words.
Imagine that … children are at once the most rewarding and challenging assignment in life. They are the source of great pain, worry and heartache … while at the same time they bring the richest joys and deepest fulfillment.
Sitting at that humble kitchen table was a woman who became a master teacher. I learned more about life in those few hours with her than I learned in all my years of university. About two years later, when she discovered Mitch was diagnosed with a fatal disease, she wrote me a most compassionate letter and offered her love and prayers. I was reminded of that time at her kitchen table when I felt so much love from her heart. I wept again … grateful for those who mourn with those that mourn. Grateful for those who have love in their hearts. I long for that day when the world lays down its weapons of war, its rhetoric of hate and shame and trades those cruel tools for more powerful agents of change. Love.
Imagine that …
Our first book is almost ready. I haven't settled on a title yet, but the story centers around Mitchell and his puppy and what happens when we give.
I hope to have the first edition at this year's #milesformitchell run on April 23rd. I'm also wrapping up a book [not intended for children] that is a candid, chronological story of #mitchellsjourney- I hope to have it ready by mid-summer. This fall we should have a book of photos and essays ready to print.
This first children's book will be part of a larger series aimed at younger children. At the back of every book will be at least one essay and photo that was the origin of the story.
Hopefully, there'll be something for kids and adults.
The first edition will be limited because I want to get feedback from early readers about what worked and didn't work. I've never written a children's book before - so I have a lot to learn.
My hope is that when kids and adults read the stories they will try to implement something new and positive in their lives.
It was mid-September 2005. The weather was so warm I thought summer would never end. The mountain trees, however, told a different story. The lush green forest was slowly turning orange and red, reminding us change was coming and that the face of the mountain would soon lose its blush, ushering winter into the valley.
It was a stressful time in my life. I had just learned my son had a terminal disease and at the same time I was struggling to make a new business venture work. There were client demands to meet, payroll, taxes and a million-and-one things that weighed heavy on my mind. Though Mitch was my 3rd child, in many ways I felt like a child myself. An imposter, of sorts. Although I could do a professional thing or two, I felt a bit like a child clothed in a man’s body, still trying to figure out who I was and discovering my place in the world. I was growing up. But growing can be painful and unsetteling.
I was no knight in shining armor. Instead, I was a flawed man in tattered cloth … but my wife loved me anyway. I was unsure of myself and full of worry – yet my clients believed in me. I was a boy trying to become a father, yet I stumbled to be the dad my children deserved. My kids didn’t notice my imperfections like I did, they just loved me for being me. It seemed that the world was kinder to me than I deserved – and for that I was grateful.
So, after a long day at the office, I set out to meet Natalie and the kids at a nearby park. When Mitch saw me, he ran as fast as his tiny legs could take him and jumped into my arms. I couldn’t get enough of this little boy and my other children.
I asked tiny Mitch how his day went. He smiled in his shy way and said, “It wuz good.” He paused a moment and then corrected himself, “No, it was gwate.” I chuckled and kissed his little neck then said, “I love you, Mitch.” He then went on to tell me what he learned from Miss Nancy, his pre-school teacher. “She nice to me,” he said with a glimmer of confidence in his eyes. I could tell Mitch felt safe and cared for – and that did my troubled heart good. Tiny Mitch, with his sweet expressions, calmed my weary soul. Though winter and other cold realities were heading our way, I was grateful for the warmth I felt that day.
Having children was a strange thing for me - for they taught me to love deeply and unconditionally. To my surprise, I needed them as much as they needed me. Such is the wonder of family.
I am grateful for my kids, for they remind me of the person I want to be.
I just returned from a father-son trip with Ethan and Wyatt. We went to Bryce Canyon and the Escalante National Park to explore the outdoors and make memories. One thing I’ve discovered along my grief journey is I must make new memories if I’m to heal and grow.
On our first night, I took my boys to the edge of a tall ridge where we could see deep into the stone carved wonders of Bryce Canyon. As the sun cast its evening light across the sky, nature’s handiwork seemed to stretch out into infinity. Millions of years of erosion had left behind a most beautiful display of stone and color. At one point I asked my boys, “Wouldn’t it be neat if we could stand here in a bubble and watch 200 million years pass in a matter of minutes? What do you think we would see? How would the world change?” My boys seemed to think deeply over that question. So did I.
All the wondrous landscape at our feet was a testament that change and beauty take time. Sometimes I think grief is like the seasons. There are cold seasons and warm seasons and there are the times of change in between. With each season of grief, I am beginning to see a subtle erosion of the old and a beautifully unexpected shaping of the new.
The second night we drove deep into the woods to take photos of the stars. Before long the sky grew pitch black and the evening breeze calmed and became strangely still. Ethan and I peered heavenward and saw more stars then in a single gaze than I've ever seen at any one time in my life. The air was so cold it felt like we were marooned on a small rock floating in outer space – even the air seemed thin. Cute little Wyatt sat cozily in my truck with the heater roaring as if he were stationed in a life capsule waiting for us to return from our space exploration.
As we peered into the vast night sky, we felt infinitesimally small. In an instant the world, with all its sound and fury, seemed insignificant as compared to the mind-boggling vastness of space. I told Ethan that scientists believe there are roughly 70 billion trillion stars in space. We know so little of the universe – and the deeper we probe the more bizarre the universe seems. All of humanity are but infants, cradled in heaven’s lap. We know about as much about the universe as those old geographers who once thought the world was flat.
Ethan was sensitive to light pollution and wanted to make sure we were as far away from civilization as possible so that he might see deeper into space. Ethan knew that the darker the skies, the brighter the stars.
So, as we sat in the cold of night looking deeper into heaven than we ever imagined, Ethan and I contemplated the relative nothingness of mankind. It was a humbling moment. Often, when Ethan and I shoot the night sky, he wonders out loud about Mitch; he asks questions about where he is, what he might be doing, and he wonders if Mitch might be near us at times. I know Ethan misses his brother and that grief weighs heavy on his heart. So, I try to be a strong shoulder for him to lean on and a listening ear and understanding heart. If I cannot take his hurt away, I can at least hold him while he hurts. And, when the skies draw black, I hope he learns to get away from life pollution – so that his spiritual eyes might see heaven’s stars more clearly. Stars one cannot see in the light of day ... stars that will surely point the way.