During his final days there were times I couldn't tell whether I was talking to my 10 year old son or a soul that was older than the universe itself. I saw it with my own eyes and felt it in the depths of my soul; something significant was happening. Although my young son was dying, his true identity was emerging and I sensed he was much older than I knew. I realized death wasn't the end ... but it was a painful goodbye, even if for now. Reunion may as well be forever away. For my heart aches and yearns to have him back with me – the way he used to be. That is grief.
As death inched closer the veil between this place and over there became increasingly thin. Those who came to visit said they felt a strong presence in our home. Natalie and I didn't always feel what they felt – we were probably too close to recognize it. Perhaps, also, we were in too much pain. Yet, in our closeness to this sorrow, we saw things others couldn't. Some things I will never share, for they are too sacred. Sometimes I wonder what it would look like were we allowed to see all that is truly happening. Perhaps we might be startled to see all the hands unseen that carry us in ways we do not now appreciate or feel.
There was a point when Mitch asked me, “Dad, is there any other way?” I held my son quietly and I wept. Countless were the nights I begged God for a way out. I pleaded for mercy. I begged for my son. As his father I would have traded places with him without a moment’s thought. I asked God, “Is there any other way?” As I tried to listen to my Father, I was reminded of another One who asked for a bitter cup to pass. Not even He was spared.
There is a saying that reads, “Most people wish to serve God – but only in an advisory capacity.” How oft have I been tempted to think my finite mind knows better than my infinite Father’s? So many times my heart cried out, “Please, not this. Anything but this.” I begged God for another way as though I might devise a better plan. Yet I know I cannot see what He sees … and I am reminded we are not mortal beings having a spiritual experience, but “spiritual beings having a mortal experience.” (Pierre Teilhard de Chardin)
I don’t know much. But what I do know is this mortal life is a place to learn and grow under the tutelage of a Divine Teacher; a place where we learn how to see in the dark and hear the voice of God in our own wilderness. I can see that now. I understand there is no other way.
Yet, here I am talking of pain and suffering as a divine tutor … and I find myself on my knees, drenched in tears, begging for relief, scarcely able to bear the weight of this sorrow. Then a whisper, “There is no other way. Be patient, my son, for you will see more tomorrow.”
There is no other way.
I don't know how my wife did it - she was so very strong. Ordinarily I can compartmentalize my emotions because I have a deeply rooted belief that cool heads and calm hearts are more apt to make the best decisions. That mindset has served me well over the years but the prospect of losing my son ripped my heart out and threw it over the hills into a briar patch of molten sorrow. Happiness seemed a universe away, perhaps forever out of reach.
In the face of my son’s death my wife put her emotions to the side and learned all she could to help Mitch. She was every-bit a hero to her family and son. I tried to be strong but when I looked at my wife I quickly realized the sheer giant I had married so many years ago. I truly stand deep in her shadow.
We had been at the hospital a few days and learned Mitchell’s life was about to end. My wife and I were mortified and unprepared for the descending hell that was thrust upon us. We told our older children the news but decided to tell Wyatt at a later time – for he was so young and we didn't want him to scare his older brother by saying anything prematurely. All Wyatt knew at the time was that Mitch was in trouble and very sick. Within less than a month of this photo my sweet little boy would pass away and my heart would be lost in a wilderness of sorrow. I would need to find my way out … somehow … some way.
The other day my wife and I sat at the foot of our bed and started talking about how much we miss our son – I saw a grief in her eyes that was just as tender as the day we lost Mitch. She told me how hard it has been for her and that she is worried memory will fade. I knew exactly what she meant. Her face expressed a grief that came from the deepest wells of human experience. We wept together – for we both wade in those heavy, dark waters. How, then, are we to find happiness when someone was so woven into our own happiness is gone?
Despite the profound burden of loss I carry, I believe I’m entering a new phase of grief – not because a year has passed and we've crossed some magical threshold, or that others tell me it is time to move on. The truth is, you don’t move on and leave grief behind … you just learn to carry it differently. But something is changing inside me and that change is good. I believe the same is true of my wife. Oh, we still hurt every bit as much as the day we lost our son, but we are taking on new feelings that seem to be a counterbalance to sorrow. We have felt genuine, liberating, and fulfilling happiness.
Over the last few days Ethan and I practiced Lacrosse and I marveled at his awesomeness, Wyatt and I made some funny videos that had us crying because we were laughing so hard, and Laura-Ashley and I talked for a few hours while she practiced driving. These simple moments with my family have brought me so much joy. I love spending time with my wife and children and I would rather be with them than any other humans on the face of the planet … and not a day passes they don’t hear it 100 times. I have an overwhelming sense of gratitude and love for my family – and that brings me deep happiness; a kind of happiness that never wears out or fades, never goes out of fashion, a happiness that is endless and enduring.
While I have discovered happiness again there remains a hole, a missing soul that I miss terribly. In the absence of my precious son, I will continue to explore my joys and sorrows. Be warned, I still have things to share that will be hard to read. Some have suggested I share only happy moments moving forward – but that I will not do. Hell happened. And I will talk about it. My hope at the end of this Journey, however long this road, is that through exploring the many aspects of grief and sorrow others may find my clumsy mileposts and offer some relief they are not alone. Each journey is so different, each sorrow so unique, but perhaps Mitchell’s Journey can help as others navigate their own troubles.
Notwithstanding my deep sorrows I have found happiness. Not because I felt entitled to it, but because I sought after it. True indeed are those prophetic words, “seek and ye shall find” for in them are required actions that unlock truths and make them mine.
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.
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.