Tiny Mitch hunkered down near a bushel of wild flowers to explore the beauty of nature. Next to him, just out of frame, was his mother tenderly describing a little about the wonders of the earth. Mitch pulled a flower into his hand and touched its soft petals with his baby-like fingers. I knew he was a gentle soul early on, but this moment made everything clear as a crystal spring. Next to my wife, I had never beheld such beauty as I did that day.
At this point we didn't know about Mitchell’s diagnosis of DMD. It would be another year before we would learn his terrifying fate. Mitch was so cute on this little adventure. He kept asking me to walk off the path and into the woods so we could see new things. I loved this day. I wrote in my journal that night, “Go gently, my son, into the future. The world will be brutal and unkind – but you don’t need to be. Your strength will be found in rising above everything that would pull you down. Go gently, my little boy – that you might bend, not break.”
And so it went with my son; he continued his life’s journey gentle and kind, perceptive and wise. Though he was a young child, it seemed as though he saw the world through heaven’s eyes. This little boy who broke my heart, was my teacher and I will ever be his student.
Mitch taught me that one can be strong and gentle at the same time. Too often people confuse kindness for weakness – but they are not the same. Eric Hoffer wisely observed, “Rudeness is the weak man’s imitation of strength.” The older I get, the more I know this is true.
I have observed people in my life abuse their strengths – which paradoxically became their saddest weakness; I've seen professionals, once titans of their industry, enter an opportunity like a blind Mongolian warrior swinging at everything and everybody …then turn to his peers and wonder if he got the right people; I've seen ordinarily smart and perceptive people use their gift of candor to criticize where no criticism was merited, and in fact well off the mark; others, I have observed, use their bold personalities to bully people into what they want. None of that is strength. It is the imitation of strength and in truth just the opposite; borne of insecurity and fed by disillusionment.
The last 2 years have been incredibly challenging, not only did I carry the weight of grief, I went through some professional crucibles that were soul-stretching. I don’t know that my troubles are over – in fact, I know they are not. But I am grateful for the hard times because they have opened my eyes, taught me important things and shaped me.
When I look back on my life and consider the things that have had the greatest impact, it was seldom a heavy hand but rather the disappointed eyes of a loving parent. It was a youth leader who, despite my teenage rebellion, reached for my hand while I was unaware I was drowning in poor choices. It was an English teacher who saw something in me I didn't see – whose gentle and kind observation changed the course of my life. It was a religious leader who offered loving encouragement and sound council – and most importantly, loving patience. And a Father who, from time-to-time, gave me just the little nudge I needed to keep going. He has never done the work for me – never robbed me of a chance to struggle and grow … but He has given me a gentle boost here and there. For that, I am grateful.
It is the gentle things that change us – not so much the harsh and terrible things.
On Mitchell’s dying day, I had taken a photo sequence of these same tender little hands, only a few years older, gently caressing his puppy who stayed at his side like a comforting angel. Mitch couldn't open his eyes and the muscles on his face had relaxed to a point he almost looked like a different person. He was slipping away and my heart was tumbling into a deep abyss of grief.
Yet, there he was, at least what was left of him: gentle and kind to the very end. My child was my teacher. He taught me how to see; through tears of grief and sorrow, he has been gently teaching me.
instagram.com/mitchells_journey/
Mitch loved shenanigans.
It was a hot summer day. Ethan was opening a present for his birthday when Mitch sneaked behind him and tried to smash a water balloon against his back. Because his arms were already weakened by DMD, Mitch struggled to lift the little water weapon above his shoulders. Lunging his body forward, Mitch hurled the balloon toward his brother with all his might and ran away giggling. I loved the sound of Mitchell’s giggle; endearing as it was contagious.
My little boy never missed an opportunity to live. I don’t mean live as in breathing – though he was very grateful to be alive. I mean to say Mitch never missed an opportunity to be in the moment … to love and laugh and drink life in the best he knew how.
Sometimes bitter ironies are the strongest teachers.
Grief is another ironic teacher. I have learned, as my friend Pat Furlong (Founder of Parent Project Muscular Dystrophy) taught me not long after Mitch passed away, that grief never really goes away. She, being no stranger to grief, told me that grief is a chronic condition: you don’t get over it, you don’t go through it … you just learn to live with it.
So, I have found grief ironic because while it has the potential to drain joy and life out of living, it has taught me to appreciate life in new and meaningful ways.
Such is the duality of grief: to be happy and sad … to be whole and broken all at once. Though I may laugh, smile and be filled with joy at any given moment, at the same time I carry the weight of grief … the weight of wanting my son back in my arms. Inside the heart of those who grief is a soul that yearns for joy and happiness, yet sorrows in what is lost. It is to be okay, but not okay … and learning to accept that’s okay.
That is learning how to live.
This Memorial Day weekend, I will honor those who fought and died so others may live. At the same time, I will also reverently honor my little boy who fought to stay alive and died ... and in so doing taught me how to live.
Mitchell’s last Nerf gun battle lasted 2 minutes. Just as his war game was beginning to unfold, he leaned against the wall about to pass out while taking very shallow breaths. With a whisper in his ear, “I love you”, Natalie lifted our son in her arms and gently took him back to his room. Mitchell looked off into the distance with his arms softly wrapped around his mom.
We knew there wasn't much time to play. So, just prior to the Nerf battle, Natalie made haste and quickly tore a piece of fabric from one of her dresses to make a headband – to show little Mitch she was “all in”.
As I followed them back to Mitchell’s room, my heart swelled with a love and sadness that to this day I cannot find words to describe. In her arms was our dying son who just wanted to be a little boy.
Mitchell would never leave his room alive.
During his time at home Mitchell received hand-written letters and packages from all manner of military officers who were serving all over the world – some in hostile theatres. They had been following Mitch and wanted him to know they were inspired by his courage and strength. Some even said it was for him they fought. One of the tender ironies was Mitchell loved the military and was so touched they would even think to write him. Call of Duty was one of his favorite games and, for a 10 year old, he had a brilliant tactical mind. Upon reading some of these letters from Marines, Mitchell would ask me “Dad, do they really think I’m strong?” I turned to my son and said, “Son, in every way that matters you are as strong as they get, and I am so proud of you.” His brow furrowed as he began to think deeply on my words.
Mitchell was so tired and listless at the time, but I continued, “Let me tell you why I think you’re as strong as people get: real strength is doing the right thing when nobody is looking … and you have always done that. You are trustworthy and obedient and good. I am so proud to call you my son. Strength, the kind of strength that matters, isn't found in the body, but in the soul. And Mitch, you have a very strong soul. I love you so much.” I kissed his forehead and he lifted his arm around my neck to hug. If only I could have frozen time …
Within 24 hours of this photo little Mitch would gaze out his window for the last time and contemplate his life and accept the harsh reality of his death. This young warrior, who was mortally wounded by an invisible enemy, demonstrated one of the highest forms of strength and selflessness by telling his mom he was going to be okay.
Having lost my son to a biological enemy that knows no ransom, has no mercy, and offers no remission … I have decided to take up arms against this enemy of the body: to fight Duchenne Muscular Dystrophy with all that I am. This is a battle worth fighting because little boys like mine deserve to live - and any family is at risk.
I have been taught that if we turn to God, weak things can become strong things; that God gives us weaknesses so we can become humble, and if we turn to Him in our weaknesses, God will make weak things become strong things. That is one of the reasons we are given hardships in this life. Today, I have more weaknesses than I have strengths but I hope, in time, I can become as strong as my little son.
There have been agonizing moments, while stumbling in the pitch darkness of grief and loss that my soul has cried out “if anyone deserved to live, it was my son”, and that I should have been taken instead. Then a whisper to my soul reminded me death is not punishment, but rather a transition from one state of being to another. I was reminded of an 18th Century philosopher who said “We are not human beings having a spiritual experience; we are spiritual beings having a human experience.”
The purpose of life: a masterfully calculated landscape of hardship, happiness and putting trust in things that are invisible to the eye but discerned spiritually … all in an effort to refine our souls. And while the world seems in a constant state of unrest and war … I find myself ever more concerned about the quiet battles of the soul … the kind of battles that destroy us from within. Those, too, are battles worth fighting – and fighting well.
As a young boy I used to get lost in the back woods of Edina, Minnesota. The wilderness was thick with all manner of vegetation, rocks and hills – and because of the very nature of nature you couldn't see very far. And when fog settled, you could see almost nothing.
Being lost as a young child reminds me of the landscapes of my life. Sometimes I sit upon a vista with clear skies and can see far into the horizon. Other times I am scaling my Everest – afraid I might fall. Still, other times I am traveling through a wilderness of hardship where the fog of the unknown makes seeing what’s ahead almost impossible.
Regardless of the landscape upon which I journey, I have learned to travel by faith. That doesn't mean to travel blind or dumb, but to learn to see with my other eyes and hear with my other ears. There is a difference, and it is significant.
As Mitch started to slip away, I found myself descending into a dark wilderness wherein I could see very little. The further we traveled into this wilderness of grief and sorrow the more difficult the terrain and the thicker the fog. I would hold my son’s face and tell him how much he meant to me. I would kiss and hug him and try to assure him – but inside I was terrified of losing him. I love him so very much. With each minute, each day, the wilderness became ever dark and perplexing. I have never known a wilderness such as this.
My wife came into my office today with tears in her eyes and said, “I know it’s officially tomorrow night (the morning of March 2nd) that Mitch passed away, but the day was on a Friday last year. Today is Friday.” Tears filled my eyes, too. I realized then I am still navigating the wilderness of grief. And what a wilderness it is…
The other day I stumbled upon a journal entry I wrote when I was 19 years old. I had all but forgotten about the dream – but somehow I had the presence of mind to write it down over 20 years ago. In my dream I was travelling in a forest heading to some place important, but I couldn't put my finger on where. I also had a wife and children but I couldn't see their faces and I didn't know their numbers, yet I knew they belonged to me and me them. Each of them was carrying picture frames. As we made our journey through the thick forest, at some point I realized someone was missing and I began to desperately search for my child. I was in a panic, and then my dream ended.
As I read my journal entry I lost my breath. I am now beginning to understand the meaning of that dream so many years later - and I can’t help but contemplate what God was trying to tell me about my future. He spoke to me, and I listened … and I wrote it down… but I didn't understand it. If there is one thing I've learned in my own journey; it is one thing to receive a personal revelation (or answer, or warning) but quite another to understand it.
I have discovered that while navigating my wilderness I must learn to rely on my spiritual hearing, not just spiritual sight. And learning to hear is a delicate and personal thing – borne of personal acquaintance.
Suppose I told you outside there were 2,000 mothers – one of which was mine. And say I blindfold you and told you to find her. I could describe her to you; I might say she’s 5.5, blonde short hair, a beautiful smile and kind voice. If I sent you out there to find her ---- you couldn't do it. Yet if you were to blindfold me I could find her in minutes. Why? Because I know her voice. So it is with God.
I am still navigating the wilderness of grief - almost as if blindfolded. But I have ears to hear. And while I may stumble and fall to my bruised knees in sorrow, I will get up and follow that voice that whispers ever so gently. A voice that is so quiet that if I’m preoccupied, I may not hear it at all.
One day, at the end of my wilderness, when I have learned what I must, I know I will see my son again. Only this time I will hold Mitchell’s face not in sorrow but in deep relief … for I will have closed the loop on that dream I had so many years ago; I will have found my son who was lost from my sight. And I will thank my wilderness for teaching me to hear my Father’s voice … a voice that is leading me home. I hear Him.