When I was a young boy all I ever wanted was my parent’s approval. I wanted them to be proud of me, to show an interest in me and to give me enough time to know they cared. As long as I knew they loved me I felt like I could take on the world.
But the world wasn't always kind. I remember moving to Minnesota as a young child. It was my first winter and I was about 9 or 10. During recess a bunch of kids were sledding down an ice-packed hill in their snow pants. I didn't know anyone so I tried to jump in and do what everyone else was doing – hoping to make some friends. I remember being pushed over at the bottom of the icy hill by some boy who felt I didn't belong. As I tried to stand another boy pushed me back down. Within a minute I was surrounded and being kicked and spat upon by a mob of young men who didn't like me for some reason. I tried to crawl up the hill but kept sliding down the packed ice … back into their relentless kicks and a rainfall of saliva and swearwords.
I don’t remember who those boys were. Even were I asked to identify them at the time I couldn't because I covered my face so it wouldn't be kicked. Thankfully there was never a repeat of that experience. Those boys had their pound of flesh and I slipped back into anonymity. I remember how I felt on the bus ride home. My jacket and snow pants dirty from countless spits, I felt awkward and inside out. I was confused and ashamed. When I got home I quietly went to our laundry room and washed my jacket and pants with hot water and a rag, without my mom knowing what happened. I vowed that day, and every day thereafter, to be kind to others and to love those who were downtrodden. I wasn't angry or vengeful. I only wanted to love more.
Over the years I forgot about that experience but it forever changed me … and I tried to be kind to everyone. In the end, when we meet our Maker, nothing really counts if we’re unkind. I think many adults forget this. I know some powerful, successful men who beneath their chest thumping and lion-like roars are just insecure boys who never really grew up. They are worse than schoolyard bullies and have forgotten the life lessons we were taught in kindergarten and our childhood sandboxes. What do we really gain if we heap upon us riches at the cost of being good? What do we gain if we create cultures of fear and gossip? Nothing but a brittle and strenuous life … and that is no life at all.
I never wanted my son or other children to go anywhere without a sure knowledge we loved them – because I remembered how much that meant to me. Sweet Mitch was blessed with kind peers. I was so grateful he was never bullied at school or by neighborhood kids. In fact, he often had a gaggle of kids around him, helping him and cheering him on. And with the exception of one short-lived teacher aide a few years ago, who was unkind to him, he was blessed by some wonderful and loving adults that not only cared after him, but cared for him. My sweet boy really never felt alone. He felt loved, and for that I am so very grateful.
I loved seeing Mitchie at school. His face radiated love and my heart exploded every time I saw his smile. Mitch was always quick to do his homework – and because of his discipline, his life was a lot easier. While my other kids slogged about [as most kids do] and took hours doing what could have taken 30 minutes, sweet Mitch was done and playing long before anyone else.
We go to school to learn basic concepts and skills – but more importantly we go to school to learn how to learn. At least that’s how it should be … because learning how to learn is the ultimate knowledge. And once we learn how to learn we are equipped for life. There is no job, no assignment or obstacle, no opportunity or hardship we can’t figure out. It is a silly thing to think our learning stops when we graduate.
Life offers some hard lessons and we are sometimes given some difficult homework. Losing my son has been the most difficult work of all – and my pages are warped with salt and tears. But I keep working at it. Each day, as I go through the homework of grief I learn a quiet lesson here and a subtle teaching there. Each day is also a test to see if I've learned or grown. If I pass, I move toward the next question or phase of grief. If I fail, I keep working at it.
Life is a fascinating school. I hope I can be like my little son – who had the discipline to not avoid the hard stuff. I have come to learn that while we may not be able to control some events in our lives, we can control how we respond to them … what meaning they have for us. And that is homework, too.
I suspect at the twilight of my own life, when my body is tired, old and grey … when I am anxious to leave and see my long-lost son … I will look back on my own life and see an intricately woven tapestry of hardships, lessons, blessings and tender mercies – all designed to help my spirit grow. A master class. I will realize with new clarity that Mitchell’s Journey started long before he was born and that the events in our lives are more interconnected than we realize. But between now and that final sunset I have homework yet to do and the work of grief, however hard and crushing, I must go through.
I believe my little boy passed the test. I hope with all of my heart I can, too.
I was looking at an old Christmas card I made in 2005 which included a mini audio CD of my kids. Mitch was only 3 years old and had been diagnosed with DMD earlier that year. In the months leading up to this little interview I spent many tear-filled nights under the dim light of our kitchen table reading everything I could about this fatal disease. From the moment of his diagnosis time became more precious than money or possessions and I did everything I could to capture as much of life as possible. Until the moment of his diagnosis I had always taken as many photos of [all] my kids because I knew they would only be little once – but suddenly there was a certain urgency I didn't have before.
I had all but forgotten about this little interview with Mitch (and my other children) and upon finding it my heart exploded.
I just threw a couple of visuals to go along with the audio. The photos herein were taken the same day as the interview.
This is short, but it’s worth listening to: https://vimeo.com/81344738
This holiday season I won’t forget the gifts that matter most shouldn't be wrapped in paper, but wrapped in love. I am forever grateful for my family.
November was upon us and the last of the leaves were about to fall. We made haste and took our kids to the park to play before the wind and snow swept it all away. Our kids thrashed about in piles of crispy leaves, and like playing in a ball pit, they enjoyed making a mess where none could be made. I remember this day so well. I was in Camelot and life couldn't have been more perfect. I can almost smell the sweet, earthy air … and if I listen closely I can almost hear the laughter of my children today.
I stumbled across this photo recently and my heart skipped because it seemed symbolic of my son’s approach to life. It also reminded me of what it means to be grateful.
Because of his growing muscle weakness doing big things was difficult for Mitch, so he learned to take great pleasure in little things. At the time his back muscles were becoming so weak that bending over was very difficult for him, and on some days nearly impossible. Sensing he was having trouble, Laura-Ashley and Ethan quickly gathered up some leaves and placed them in his hands and Mitch would throw them in the air and say “weeee!” I remember feelings of warmth wash over me as I saw my children serve their little brother. Something so simple. Something so beautiful.
Mitch was always grateful for the little things and I believe that was the key to his happiness.
Roman philosopher Cicero wrote “Gratitude is not only the greatest of virtues, but the parent of all others.” I have found that those who are most unhappy in life seem to be the ones who feel entitled to more than they have. I am reminded of a saying I heard years ago “you’ve heard of the man who cried and cried because he had no shoes, until he saw the man who had no feet.” If our blessings are relative, so gratitude should be.
I lost one son to Duchenne Muscular Dystrophy – and it nearly destroyed me. Almost daily I have a moment of horror where the reality of my son’s death knocks the wind out of me. I cry every day for him. But I know families who have lost two boys to DMD. Still, I know others who have lost (or will yet lose) every single child they have to DMD. I cannot imagine what it would be like to endure such compound losses. Suddenly, when I consider the harsh realities others must bear, I feel like the man who cried because he had no shoes.
When I think back on this moment with my children I am reminded of Mitchell’s gratitude for the simplest of things. I am reminded that my children took me to a special place … a place of goodness and beauty … a place that cannot be purchased with money or won with things ... they took me to Camelot.
They taught me that Camelot is a state of mind and condition of the heart that is borne of gratitude. And I have found that when I am grateful, suddenly I find light where there appears to be none. Beauty where there is desolation. Happiness where there is sorrow.
This Thanksgiving, and every day hereafter, I shall ever be in search of Camelot. Even though I may be buffeted by sorrow and difficulties unknown, and my heart bruised and tender to the touch, I will follow Mitchell’s example and fill my heart with gratitude.
Then, suddenly, I will see that Camelot is all around me.
Last October, almost at this very time, we took our kids to the mountains to shoot some family photos. The air was crisp like an apple and carried an aroma of pine and cedar, a hint of dirt, crunchy leaves and soggy wood. Fall was in the air and Mitch loved it. And because he also loved smells … the mountain air seemed to be something of a gift to him that day … as if to offer a loving farewell to a little boy who would soon go on a journey far from this place.
Mitch loved the seasons and the transformations that came with them. With each season Mitch became excited for what lie ahead; the promise of the summer sun, the chill of winter snow or the renewal of spring blossoms … he loved it all.
In almost every way, Mitchell was just like me. He loved everything I loved. What’s more, in ways that are difficult to describe, he often felt like my echo.
So, we got busy taking a few family photos. It isn't my practice to take many portraits because I prefer raw captures of life unrehearsed. But from time-to-time portraits have their place. We took one of my favorite family portraits on this occasion and I will treasure it the remainder of my days. I will post it soon.
While we were busy experimenting, Mitch asked if he could take some photos with one of my cameras. By this time in his life DMD had weakened his arms to the point that it became difficult to lift the camera to his face. So I mounted my camera to a tripod, stepped aside and let Mitch take the lead. I took photos of Mitch shooting his mom and sister and I thought he was so cute directing the girls. Mitch took some great photos that day. Oh, how I love him.
Whether on his own or in some class Mitch always startled me by his insightfulness. Ordinarily shy and reserved, he had a mind that was deeper and more thoughtful than he would lead someone to believe. Once a week he attended an art workshop in the evenings. Mitch often resisted because he just wanted to be in the comfort of our home. But Natalie, being a wise parent, knew what was good for her child wasn't always comfortable or easy. So, she lovingly insisted that he go – encouraging Mitch to learn and grow.
He always seemed to leave with a frown but come home with a big smile. As his art portfolio grew in size – so did his confidence. Mitch, like my other children, was experiencing a transformation from something good into something greater. As with all things worthwhile, that kind of growth required work, leaving his comfort zone and persistence.
My wife teaches me about parenting every day. As a parent, her choices are instinctively wise and forward-thinking – ever mindful of the transformations our children are experiencing. I have much to learn from her.
Transformations. That is the singular reason we are here on earth, I believe. We’re not here to build homes, accumulate things and eventually die. We’re here that our souls might learn and grow – to transform from something good into something much, much greater. And growth can be uncomfortable, scary and painful. Oh, it can be painful.
Toward the end of his life I began to sense that Mitchell was more than he seemed. As I mentioned in my funeral address, I began to look upon my son with spiritual eyes and sensed that beneath the veneer of a 10 year-old’s broken body was a spirit much wiser and older than I realized. Mitchell has transformed into something I can no longer see or feel. But I know he lives.
My wife, who is spiritually wise always teaches me without trying, seemed to instinctively understand that “what is good for us isn't always comfortable or easy.” Despite his protests, she took Mitch to those workshops … and he grew. I admired my wife’s loving insistence and watching Mitchell’s transformation.
The Father of my soul has taken me to a workshop – the hardest of all workshops. With tears in my eyes and a trembling heart, I hope to follow my son’s example and return with a smile on my face and a transformation in my soul. Nothing of value comes easily, and I pray that I’ll never lose sight of what my wife so humbly taught me: “what is good for us isn't always comfortable or easy.”