I stumbled across this photo recently and was swept back to this very moment my weary son leaned into my arm – like he so often did. For a moment I forgot about our troubles. Everything seemed normal and dreamlike. I couldn't believe it … it was all a bad dream. That was until I saw the cables coming from Mitchell’s arm … cables that reminded me my dream was in reality my worst nightmare.
Baby Marlie, ever the faithful comforter, sat patiently and lovingly on Mitchell’s lap. I was in the presence of two tender beings that were meant to be together – even if only in passing.
At that moment I couldn't help but think these two little ones were fellow travelers on their sojourn through life: one sick little boy about to die and would travel to that place beyond the hills, and a newborn puppy who had just arrived. They were unaware they were passing each other in opposite directions, but for a moment they gave each other comfort and I thank God for that. Although I experienced the absolute horror of losing my son, I witnessed a tender mercy for which I will be forever grateful.
Since my son’s passing I can’t help but think we are all travelers: some travel the straight and narrow, others take crooked paths, while others get lost in the wilderness. Some go nowhere. There is a saying, “Beware the man or woman who boasts 20 years’ experience, when it is the same year repeated 20 times.” I hope I’m always travelling forward – never backward or in circles. Still among the travelers are those few of whom M. Scott Peck wrote, that take the “road less traveled.” Whatever journey we find ourselves, we are travelers just the same. Sometimes we are weary travelers.
I have discovered on my own journey the work of grief is the hardest work I have ever known. It is emotionally catastrophic and everything is a wasteland. In truth, there are some days night can’t come soon enough. For my pillow beckons me and offers rest and escape from the sorrows that weigh heavy on my mind and heart. There are many nights long after everyone has fallen asleep, I wet my pillow with my tears. Tears for my son. Tears for my broken-hearted wife … and tears for my children who miss their brother with all of their hearts.
As a traveler who stumbles on a broken road I find myself weary and very much in need of rest. I don’t rest to run from my troubles. I rest to re-calibrate. I learned years ago we cannot run from our troubles, at least not for long. At some point, if we don’t work through them, our troubles will multiply. Rest we must. But work we must do, also.
A few years ago I learned baby chicks about to hatch must break through their shell on their own. Any attempt to break the shell for them, trying to make their life easier, is not only counterproductive but often fatal. The very act of their struggle gives them the necessary exercise to build strength so they can survive on the outside. What’s more, the time it takes to break free is also vital for their bodies to adjust to their new life. If done hastily, if they are robbed of their struggle, they often die.
Like those baby chicks who struggle to break through, at some point I will come out on the other side of this stronger. While I might be tempted to pray to God for relief … that He might make things easier, I know better. Instead I pray that He gives me strength equal to the task - for it is in the struggle we are made stronger.
I am a weary traveler on a broken road. I don’t feel strong. I often collapse. But like those baby chicks that are destined for a life on the other side of struggle, I will fight on. God willing, I will fight on.
Today we received a package from a kind follower of Mitchell’s Journey. Not a single gift or letter from any of you has gone unnoticed or unappreciated. To the contrary, we have taken careful notes and saved every act of kindness from the beginning of this journey. One day, somehow, we hope to personally thank each of you who have reached out in love and support.
I will share more of the thoughtful gifts we've received in the months ahead but because this one came today, I thought to share it now. My wife and I were so touched by this star.
To the family who sent this, we thank you.
As I looked at this gift, this thoughtful star, tears filled my eyes.
I thought to myself: How can a fallen star shine so bright?
Then a whisper: Because what they give is spiritual light.
Sometimes it is on our knees and in our deepest sorrows that we find God anew – and strength to face tomorrow.
We were out of time.
The window to laugh, build Legos, have Nerf gun battles, and play games as a family had closed. As that window closed a new window was beginning to open. A window to that other place; a place that requires faith in order to see and feel … a place that hides behind a curtain of darkness where everything there is out of mortal view. I could feel the breeze from that new window that was opening – it was both calming and frightening.
Each of us came to Mitchell's bed to have a sacred one-on-one conversation ... to say goodbye to a sweet little boy who had been woven into our hearts and souls. As hard as it was to say goodbye then, it is infinitely harder now that he is gone.
This was the end and deep inside my heart I was terrified. Sweet Mitch knew he was about to die, yet he faced that harsh reality with dignity and selflessness. He wanted his mommy to know he was going to be okay. But inside I wasn't okay. As his father I spent my life trying to care for and protect my son and couldn't save him from DMD. If my son had cancer, he might have had a chance. But for children with DMD, there is no escape. Absolutely none.
When it was Ethan's turn, he knelt gently by Mitchell's bed and held his hand and told him how much he loved and admired him. As I left the room I turned my head and saw two young boys who just wanted to play – and my heart was pulverized. I quietly shut the door and fell to the floor and wept tears of the deepest sorrow.
This would be the last conversation they would have in mortality.
Later I learned that Ethan made sacred promises to his little brother. Ethan told little Mitch he looked up to him and that he would never forget what he taught him. He promised his dying brother he would live a life that would honor him. They talked for 45 minutes.
As my son was slipping away my mind and heart were wracked with self-doubt and sorrow beyond all description. A torrent of panicked questions flooded my mind ... "Have I said all that I want to say? Have I apologized for all of the times I disappointed him? Does he know how much I love him? Really, truly, does he know? How do I say goodbye to my little boy? Is my son okay?" Despite the panic and doubt in my heart, I tabled my emotions for my son and remained calm and assuring for Mitch. To Mitch I could fold mountains and put them in my pocket. But inside I was stumbling over pebbles.
I wasn't afraid of death for I know life continues after death. I know it. But I was afraid of goodbye. I was afraid of the end. The end of cuddling, of conversations, of hearing his voice, his laughter, his sense of humor, his very being as I knew it. It was all coming to an end. Although I knew goodbye was "just for now" - it hurts just the same.
I had weeks to prepare knowing this time would come, yet despite my preparations for this loss I was trembling in agony. Intellectually and emotionally you brace for the impact of this loss - but when it happens you realize the bracing isn't to stop the impact but to keep you from breaking apart.
I don’t know what promises Ethan made Mitch this day - but I know he will keep them. I also made promises to my son – that I would do my best to live a worthy, good life – so that I might see him again. And while I am mortal and deeply flawed, I will not stop trying. I will pick myself up when I fall and keep trying. That is my promise. I will never lose sight of my son and I will pay any price to be with him again.
As I wrote in a post earlier last year, “there is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”
I run.
Mitch never did a chore in his life. Yes, he had duties like the rest of our children, but they were never a chore for him to do.
It is Saturday morning and I can’t help but remember how quick Mitch was to do his weekend tasks. He always did his duty with a smile on his face and gladness in his heart. He knew whether with homework or household tasks, the sooner he did what was required the sooner he could get on with life and enjoy his day. What’s more, he did his work with a happy attitude … Mitch never did a chore in his life.
I love my son. I am grateful for the little lessons he taught me. Today and every day, I will do the hard stuff first – and I will do it with a smile on my face and gladness in my heart. For little Mitch taught me a glad heart can make heavy things seem light.