Yesterday I found Ethan sitting on the edge of Mitchell's bed playing one of their favorite video games. Mitchell's room remains virtually untouched since the day we lost him. Even the stack of Xbox games Mitch gathered up to keep his worried mind occupied are still there, just the way he left them. I asked Ethan if he was okay and he replied, "Sometimes I like to play in here because it reminds me of him." It was a sweet moment ... not a sad moment, just tender with brotherly love.
It occurred to me through this simple exchange with Ethan, though death may cause our loved ones to leave us, they never really leave our hearts. I wish them being in our hearts were enough to assuage the pangs of grief, but it is not. Though they live in our hearts, at least the memory of them, it is at once beautiful and terrible.
“Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it. ”
It was a hot, muggy and vaguely miserable summer-like afternoon. We were at a family reunion/vacation far from home. The days were long, and there was a lot of travelling and waiting in the heat. Even the shade of trees didn’t offer much comfort from the suffocating humidity. It was easy to feel miserable.
Mitch could tell Ethan was getting worn out by the heat, so he called out to his older brother, “Effie, come over here. I’ll give you a ride.” Ethan smiled with relief and ran to his little brother who wanted only to serve him. With a childlike thump, Ethan plopped his bum on the seat, and Mitch powered up his scooter. Just then, mischievous Mitch turned to his brother and began to blow on his face. “There, are you cool now?” Ethan grimaced, and they both began to laugh and laugh. Mitch never missed an opportunity to laugh or make any heavy situation seem light.
There is a layer to little Mitch I don’t often write about, and that is his sense of humor. As Mitchell’s body grew from toddler to young boy, his mind and soul began to grow in unexpected ways. On more than a thousand-and-one occasions, I was startled by his intelligence, deep insight or brilliant humor. I admired him and often said to myself, “Who are you, really?” I sensed a greatness in him that was just beneath the surface of that otherwise quiet little boy … I sensed an old soul slowly awakening and that he had a very special purpose on this earth.
As I look at this photo, and many like them, I remember how often Mitch taught me the importance of laughing whenever you can. To this day, some of the funny things he did years ago still make me giggle – and my soul smiles. How I love that little boy. How I miss him.
At the time of this photo, Mitch was becoming noticeably weaker as compared to the rest of his friends. While they ran at top speed, he stumbled and could hardly walk the distance of a basketball court without his legs almost giving out beneath him. While they jumped, he fell to the ground. The world was closing in on little Mitch, and there was no escape from the muscle wasting that was slowly taking his life away from him.
Life for Mitch was a lot like this hot summer day; it would have been easy to feel miserable.
What I love about this ordinary image is how it captured his resolve for joy. Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it.
Oh, what a difference it makes to treasure what we have instead of measure what we don’t.
Mitch taught me that when I find gratitude in what I have, joy follows. And where there is joy, there is laughter.
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 …
When our kids were younger, Laura-Ashley would hold make-shift classes on Saturday morning. Instead of playing with toys or calling friends to hang out, she would gather up old stools and turn them into ad hoc desks. Within minutes she would transform her bedroom into a classroom. My sweet daughter would spend an hour writing up some form of curriculum, drafting handouts and preparing homework assignments for her younger brothers. And when class started, she would teach the boys about math, science, english and other topics. At the time, Wyatt was a tiny toddler and had no idea what was going on; he just sat patiently in his chair because his brothers were there.
Ethan and Mitch, being older, would always walk away with a homework assignment in hand, only to return later and have it graded. Most of the time Ethan and Wyatt attended her class - but Mitch always showed up. Always.
This is a photo of Mitch showing up. In truth, he didn't need to be there. He had already finished his chores, completed his real homework and was entitled to play time. But because showing up was important to his sister, it was important to him. I love that about him.
When I stumbled upon this photo series recently I was reminded of the power of showing up. He never had an agenda for personal gain – he simply offered his love and support. And that is a powerful thing.
So, when I look at this photo of an ordinary Saturday morning, when Mitch decided to show up, I feel a deeper resolve to be there for my wife and kids in every way I know how. I am flawed. I struggle to do the very things of which I write – but I try. God knows that I try. I am getting a little better at it each day.
Sometimes for those who wrestle with grief or struggle in other ways, just showing up and offering love and support is all that is needed. I receive thousands of private messages from people asking for advice, so they might help their friend or family member who is struggling. They almost always worry about saying the right thing in the right way – carefully treading an invisible minefield of words and unknowable emotions.
In my experience words of consolation, while comforting at times, do very little in the end. My advice to those who seek to comfort another is to worry less about the words you use and think more about how you cause the other person to feel. Sometimes showing up and saying, “I want you to know I care” is enough … and more.
I remember when my neighbor, Nate Copling, came to the hospital when Mitch was in the cardiac intensive care unit, on the verge of dying. He simply showed up, just like little Mitch did for his sister, and offered love and support. That meant a lot to me. But it was what he didn’t say … what he didn’t need to say … that made all the difference.
After this gentle, good man said goodbye to Mitch I walked him out of the CICU into a darkened hospital hallway. He turned to me with tears in his eyes and said nothing. He didn’t need to. I felt that he cared deeply. I knew that he mourned with me – which was more powerful and consoling than any arrangement of words.
Mitch and my friend Nate taught me how to show up in body, heart and soul. And when we do that, everybody grows.
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For those interested, I just posted a few extra photos of this moment on instagram.com/mitchells_journey