It was a year ago this very evening (almost to the hour) I received a call from Mitch who was in bed for the night. I was in my basement office when he called from the home phone to tell me his heart felt strange. Immediately I dropped what I was doing and ran to my son. When I first laid eyes on him I saw nothingness in his face. Upon seeing him I quickly scooped him in my arms as he came to. I remember thinking to myself, “[Please] … not like this. I’m not done with you, little buddy.” It was then that I felt the heavy, cold breeze from the abyss that was inching to devour my son. I could almost feel the ground from under him crumbling and it was then I sensed the true depths and darkness that was lapping at my son’s feet. Death was coming and I didn't know how to stop it. Within a week I would come to realize that death wasn't at our door but in our home lying in wait.
I stayed with Mitch a while to reassure him and to let him know I loved him. I tucked him in nice and snug, kissed his face and took this photo of his sweet smile. We talked about his Minecraft base and other things on his mind. He knew I was recording our conversation and he gave me a sneaky smile. He was as perceptive as he was innocent and sweet. I knelt by his bed and ran my fingers through his hair and said, “Son, people spend their lives in search of treasures. They go to the ends of the earth; they sometimes kill each other or themselves in search of it. They drain oceans and level forests in search of treasures … treasures that don’t last. But I have the world’s greatest treasure … and that is my family. You, son, are one of my greatest treasures. I want you to know how much I love and treasure you.” He smiled and snuggled his head deep in his pillow and drifted to sleep. I miss him.
Once Mitch was sleeping I went to the kitchen and wrote what happened in his event log. A few months prior we started documenting events and irregularities in search of patterns - there were none. In fact, nothing like that had happened before and I didn't know what to make of it. I didn't realize this small tremor was a prelude to a biological earthquake that would strike a week later and send my son into a death-spiral of end-stage heart failure.
The original post of this event can be found here: https://www.facebook.com/photo.php?fbid=612458198783845&set=pb.192859897410346.-2207520000.1390160799.&type=3&theater
Until this night I didn't recognize this was the beginning of the end. I just did what I always did … I looked him in the eye and told him I loved him. Never a day passed that I didn't tell my kids how important they were to me. … how important they are to me. We spend our lives making sure they’re bathed, fed, clothed and on top of their homework … but I think kids should also be fed with love and clothed with confidence.
Why do we wait for someone to die before we eulogize them? Why do we withhold words of affection, commendation and admiration as if they were scarce commodities? Sometimes, at funerals, the nice things we have to say are said too late. And I get the sense, that for whatever reason, some people die a little inside each day – and a loving observation or a word of encouragement can be just what someone needs to breathe new life into their life. It’s been my experience that as long as I’m truthful and sincere with others, telling them what good I think of them never gets old and is always appreciated.
I said nothing at my son’s funeral that he didn't hear a million times from me. I didn't want him to go a day without a sure knowledge he was loved and treasured. And I hope that whatever thoughts crossed his mind as he was slipping from this world into the next that he knew how much he was loved and treasured by his mom and dad. I hope my son had a sure knowledge I could search the seas, the mountains and trees and never again find a treasure quite like him.
Though I can no longer hold my son, my treasure, as I once did he has made my life richer and more meaningful. Children are treasures that last.
The day was drawing to a close as we left a neighborhood park. We had packed our things and headed home to have an evening BBQ in our back yard. As we started our way up the grassy hill I took this photo of Mitch. To the left of this image (out of view) is a hill with a paved path that is the way home. But to get there Mitch had to drive to the street, turn left, and then backtrack on a different sidewalk to the path that would lead him home. We never left Mitch behind and he was always accompanied by at least one of us. But on this occasion Mitch wanted to jump-start his commute and got ahead of us. My heart went out to my son because even though we were there for him in every way we could think, in many ways he remained alone.
Everywhere we went Mitch had to take the long road. Circumstance often required him to leave the crowd and sometimes go great distances in order to navigate his scooter and go where his friends went. For him the party was always “over there” and sometimes he would miss out because of the time it took to get places. But Mitch always smiled and tried to make the most of what he could do. Yet, deep inside and rarely voiced, he longed to be like other boys and do what they did with ease.
On one occasion, while attending a week-long MDA camp, Mitch saw a young man with DMD on a ventilator and said to his Aunt, “I’m the lucky one.” Sonya, his aunt and second mother, held back her tears knowing the time would come that Mitch, too, would need breathing assistance. The road ahead for Mitch, if left uninterrupted, was longer than he knew. But he was too young to carry a knowledge of such heavy things, so she kissed his forehead with a soft smile and said “I love you.”
“I’m the lucky one” … I suppose in a manner of speaking he was. Luck, after all, is relative. At least for Mitch the world he had grown to love would soon be taken from him piece by agonizing piece. With the passing of each year Mitch was on course to lose muscle strength until he would no longer be able to use his arms, neck, breathe, eat or swallow. This little boy who loved to wrestle, explore the outdoors, dance and use his body to drink life in was soon going to face some horrible, paralyzing realities. And though it pains me to think it, at least for him, perhaps he was the lucky one.
I remember the night I wrote my family about Mitchell’s diagnosis in 2005. He was only three at the time. I described how the road ahead for our son would be long and eventually he would go places we could not follow. Though we would be beside him, kissing him, loving him and cheering him on … the road Mitch was to travel was his, and his alone.
I knew back then I could not trade my muscles for his and give him my strength – though the lion in my soul desperately wanted to. I could not give Mitch my heart so he could live – though the broken daddy in me would have done anything to trade places with him. Like the ticking of a clock that keeps me awake when I desperately seek rest, every beat of my own heart reminds me I could not save him … and that breaks my heart.
When we started out on this journey I thought my son’s road would be longer … and I am pained that it was not. Where Mitchell’s road ended mine continues – and the road before me seems to stretch out as far as my mortal eyes can see. This path, this long road of grief and sorrow is perilous and difficult to navigate; but forward I go. Forward I must.
This experience has taught me in new ways that suffering is singular. Surely there are shared sorrows and there is comfort to be had in mourning with those that mourn … but at the end of the day, we must learn to cope with sorrow, disappointment and hardships on our own. We can help each other along the way, but nobody can do that work for us … and that is the long road, the work we must do alone. But alas, we are never truly alone … there is help from that place beyond the hills … even blessings unseen.
So as I travel the long road of grief I will remember my son’s words “I’m the lucky one” and count myself lucky beyond measure he was my son. And when I encounter others who travel this, or other long roads, I will stop and honor their struggle and I will love them. Perhaps together, for a moment, we can find rest … knowing full-well the road before each of us, however long and hard, will be for the best.
As we walked out of the viewing room with my two boys pushing Mitchell’s casket down the hall, I found myself terrified to turn the corner and walk in the chapel where hundreds of people waited for the funeral to begin.
When I was 18 years old I did the same thing, only I was following my father. I had never really been to a funeral before. I mean, I've been to funerals as a child, but I was never really there because those who passed were people I didn't know and, as young boys, playing with long-lost cousins was all we ever seemed to care about. So suddenly I found myself actually there … at a funeral … following my father who was a broken, lonely man and had become a dear friend to me. I had grown to care so much about him and he was suddenly gone. When we entered the chapel everyone rose to their feet out of respect. I was unprepared. I didn't know that’s what people do and I was taken aback by all that came in honor of my father. Through tears and blurred vision I made my way to the pew. And thus began my first journey through the maze of grief.
So, 22 years later I found myself once again at a funeral … reluctant, heavy with grief, this time following my precious son. I was afraid to turn the corner because I knew what would happen and I didn't think I could witness so many rise to their feet in honor of my broken son. By my side was my tender wife who was also broken and I didn't know how to help pick up the pieces and put her back together again. How I wanted to …
As we were about to enter the chapel I desperately wanted to stop the procession, pick up my son and put an end to the nightmare … to call off the joke or the misdiagnosis because surely there had been a big mistake. Like a horrifying dream from which I couldn't wake, a part of me wanted to race him back to the hospital and infuse his body with warm blood and start his weary heart again. After all, he was just with us days ago – why couldn't he be with us once again? I was desperate to hold Mitch, and kiss his neck and his face and love him like I didn't know to do … until this very moment. These are but some of the games the mind plays when processing the impossible.
It seems to me that many good people on the other side of grief, the observers, can sometimes have it all backward. Somehow they’re tempted to think, as I used to think, grief is greatest leading up to and at the moment of death … perhaps a few weeks after. But all of that is easy, by comparison. Grief, with all its weight and fury, takes its crushing toll in the emptiness that remains, in the dull silence long after our loved ones have gone.
We are fast approaching the first anniversary of my son’s passing. I still have much to say about grief and sorrow, faith and family, love and loss. I have much to say about God and His tender mercies – for we have seen many. And though I cry out in grief and sorrow [and oh how I cry, and oh how I grieve] I thank God I was blessed with my son.
Some of what I have written and will soon post will be the rawest of my writings yet. They will be hard and will surely draw the criticism of armchair pontiffs and self-appointed moralists. But this is my story and my beliefs – and I share them without apology.
Lest anyone wonder that we wallow in grief, rest assured where we stand today is different than where we stood last week. Each day is a struggle, each night laden with grief. But we are turning corners, step by step, and making progress week by week.
Mitch followed me wherever I went. He was my shadow … my dear child and sweet little friend. He seemed to always find comfort being around me and in his absence I have come to realize how much comfort I took in being around him.
Last summer we had some family over for a BBQ . Everyone was inside or up the hill in our back yard talking. I found myself at the grill doing what dad’s do and I turned to the place Mitch usually sat while I cooked and he wasn't there. Never a chair seemed so empty. I started to cry.
I took this photo a summer prior as Mitch sat with me while I prepared dinner at the grill one hot summer evening. It was a perfect night and I enjoyed listening to Mitch talk to me about his plans for the future. I normally never take selfies because I am far more interested in what I see in other people than I am in seeing myself. But this time I made an exception because I was with my sweet boy and I wanted a photo of the two of us. I almost didn't take this – but I am so glad I did.
I think I am beginning to understand the deeper meaning of the scriptural passage “the valley of the shadow of death.” Over the years I have heard many recite that passage as though they were words from a hallmark card. But I have come to learn that all of ancient scripture are not only accounts of mankind’s dealings with God, but a record of real sorrows, what we’re to learn from them and why we suffer. Deep inside that poetic prose are words that carry heavy meaning, borne of real consequence and real sorrows.
Death indeed has cast its shadow. Shadows, by their very definition limit ones view – we cannot see what happens over there. And in death’s towering shadow I find myself on a journey through the valley of grief … a valley that is deep in the shadows … deep in grief. It is a place where I stumble and a place where I weep as my heart and mind search for my son and that unspeakable peace.
I miss my son, my shadow. I love him. I weep for him. And as I find my way through the valley of grief and sorrow, deep in the shadow of death, I am not afraid … for I know God lives. I know He loves us. And while being mortal we may be required to suffer – there is a divine reason for all that we experience. If we look inward and upward we can learn and grow … even through the dark shadows and deep valleys that only God knows.