Ever since he was a young boy I have taken Mitch (and my other kids) to work with me from time-to-time. When Mitch was especially tiny I would make pillow & blanket forts under my conference room table and he would cuddle in his little cave of comfort to watch movies, play with toys and eat treats while I went about my meetings for the day. I would take him to lunch and we would talk about the big stuff that was on his little mind. I treasure those memories greatly. As Mitch grew older he no longer sat under my desk but at it with a computer building digital forts in Minecraft.
This is a photo of Mitchell’s last time at work with me. He was just denied a heart transplant and I remember sitting across my desk looking at my sweet boy worried about his future. I had no idea the darkness that would soon come into my life. I saw a sweet young man who just wanted to live a normal life and enjoy the simple things.
I thought we had more time with him. I have come to learn the hour is always later than we think. Time, if ignored or mismanaged, is never on our side and becomes a thief of opportunity.
I have spent almost the last three years of my life helping to lead a company to launch that is aimed at helping people close the gap between what they value and what they do. I believe it is an inspired company and I hope it helps people live a life of greater meaning and less regret. Little Mitch was too young to really understand what my company was about – but it was because of him that I invested my time there. My family is one of my highest values, and I sought to live my values the best I knew how, and at the depths of my soul I want to help others do the same. So there Mitch sat at my desk … he just loved being around me and more than anything, I loved being around him. I was simply trying to live what I valued.
On my bookshelf is a statue of hands, one lifting another. I put it in my office as a symbol of why we exist as a company – but more importantly, a symbol of the desires of my heart. What good are hands if we don’t use them to lift others up?
Since the loss of my son I have not only struggled with bewildering grief, I have suffered the wrath of foolish men who were blinded by pride and arrogance – and sought to tear me down. While I’m no pushover, for a while I believed them and I wondered if I was capable of anything at all. A season already darkened by death became even darker by the destructive actions of others … others who knew better. I just held on the best I knew how, remembering they were human, too. I prayed to have a forgiving heart. What kept me going was remembering a profound lesson Mitch taught me: “Be nice to each other and be glad you’re alive. Nothing else matters.” I am grateful my son taught me to see past my troubles and to remember what really matters.
I have discovered grief is much like a cocoon. While we are wrapped up in grief a transformation happens whether we like it or not. At some point we will emerge from that cocoon, having become something different than we were before. What we become is largely up to us – shaped by the decisions we make during that transformation.
Today, I can feel the cocoon of grief lessen its suffocating grip on my soul. I still hurt. Sometimes deeply. But, something is changing … and I feel it is good. During brief moments of profound sorrow I wondered if there was any hope at all … hope of a life beyond such a terrible loss. To my relief, I have discovered there is.
I am still going to write of grief: the grief I feel and the grief I felt. I will share hard things and soft things – and everything in between. And as I emerge from this cocoon of grief, I will share my experience with that, too. Whatever happens during this transformation, whatever I become … I will always miss this little boy. I will always long to hear his voice and touch his face. I will always miss his companionship.
One thing Mitchell’s Journey has taught me is if we live what we value, when everything falls apart, we won’t.
The night before Mitchell passed away we sensed time was running out. As the sky quickly darkened the air grew eerily cold … and with each breadth, we felt a heavy, somber feeling grow within our hearts. That abyss that was inching to devour our son had its mouth stretched wide and was beginning to swallow him up.
We were preparing to cuddle with Mitch in his room and read him stories to comfort him when we received a call from his best friend and next-door neighbor who wanted to see if he could play. Unaware that Mitchell was already slipping away and was coming in and out of consciousness (mostly out), we asked this young boy if we could speak to his mother. We told her Mitch didn't have much time and that perhaps her son would want to come over one last time. Within a few minutes of that call, this young boy came over to say goodbye to our baby, his best buddy.
Mitch absolutely loved Luke. Whenever he heard his friend knock on the door Mitch would yell out, “Lukey!!!” Mitch was always excited to spend time with him … so this last visit would mean more to Mitch than I think Luke realizes to this day.
What I then witnessed in the quite of Mitchell’s room was the most tender interaction between two young boys I have ever seen. It was a sacred exchange between two boys made of clay – each being shaped by experience, hardship, sacrifice, and love.
Lying on the bed was our young boy much too young to die. Standing next to him, another young boy holding his hand, bearing his young soul … much too young to say goodbye. It was not my place to ask God why such heavy things were required by hands of these two innocent souls. Instead, I began to ponder deeply and pray in my heart to understand what we were meant to learn from this hardship.
These aren't the only two children to experience this, and they won’t be the last. But they were our kids … and we loved them so. It hurt so very much to see.
This young boy, who had loved Mitch like a brother and faithfully served him with all his heart told Mitchell how much he meant to him, that because of Mitch he learned what it meant to be a true friend and that he would never forget him. Luke struggled to hold back the tears, his voice was broken with emotion, as Mitchell lay unable to move or speak. His eyes barely open, my little son listened to tender words of affection and friendship. My wife and I wept as we witnessed love and friendship in its purest form. I knew that Luke, Mitchell’s faithful little friend, was breaking inside.
Afterward, I hugged him and told him how much my wife and I loved and appreciated him. I told him I was sure if Mitchell were able to speak he would tell Luke that he loved him like a brother and that he appreciated how he was always there to help him when his muscles were too weak, and how much it meant to him that he always cheered him up when he was sad. I told Luke that he taught Mitchell and his parents what it meant to be “your brother’s keeper” and that we were so grateful to him.
Later that evening I couldn't help but think of that tender experience between these two young boys who were forced to grow up much too fast. I pondered the meaning of human suffering and the difficult experiences we are sometimes required to endure. I have learned to appreciate an old Jewish proverb, "Don't pray for lighter burdens, pray for a stronger back". It would seem that in all religious texts, no matter one’s religion, God makes no apology for pain and suffering. In fact, I have come to understand there is a sacred relationship between suffering and spirituality if we learn to listen and endure it well.
I admit the burden of losing my precious son has my knees trembling, hands shaking and my soul in tremendous pain. There exist no words in the human language to describe the depths of this sorrow. It is simply, utterly, bewilderingly heavy. But, like all suffering, the sting of that pain can make way to a deeper compassion toward others, a greater capacity to love, a stronger desire to reach toward God and understand His purposes.
The truth is, we are [all of us] no different than these two little boys. We are all made of clay. And with each choice we make, each reaction to events in our life, we carve out something beautiful or something hideous – something that loves or hates. We need only look at our own life experience to know this is true … we have all seen some let the clay in their hearts harden and become brittle or unmovable. Others allow the tears of suffering to keep their clay soft and pliable.
It has been an agonizing 1 year and 7 months since I have seen my precious son. My clay is still drenched with tears and soggy. One day the tears will eventually dry and I will do all that I can to remain pliable.
A few years ago we took Mitch to an MDA camp. He always had mixed feelings about going because he didn't like being away from home. It was also hard for him to see other children who were much further along the devastating path of DMD.
Over the years I learned to pay close attention to Mitch. Though quiet around people he didn't know, he always left breadcrumbs that told me he was thinking and feeling more deeply than he would lead others to believe. My experience with Mitch taught me how to hear what was never said aloud and to see what was often invisible to others. Learning to hear and see things that weren't obvious helped me love and serve my son and for that I am grateful.
So, as Natalie stood in line to register Mitch for MDA camp I was taking photos of … everything. Amidst the chaos of checking in I saw a young boy pass by whose muscle deterioration was more advanced than Mitchell’s. Mitch was polite enough not to stare, but he did notice this young boy out of the corner of his eye. As this young man passed I could see Mitchell’s head following him gently until the boy was behind him and out of view. Mitch then looked out the window pondering deeply, trying to make sense of things.
It was on this day I began to see Mitchell’s true eyes: eyes that read between the lines, see through the superficial … eyes that discern. Little Mitch was beginning to see. It was after this moment that I began to notice an awakening in Mitch. And, over the following months and years I had an unshakable feeling that he was being prepared for a significant change. Just before we learned of Mitchell’s failing heart I remember telling some who were close to me that I had a brooding sense something unusual was happening and that my son was undergoing a spiritual change; a quickening of sorts. I couldn't put my finger on it, I just knew something was happening. My eyes, too, were beginning to see.
Last February, as Natalie and I were driving Mitch home from one of his last excursions he said, “I will never get well. I will never get better. I know I will die.” At the time Mitch didn't know how close he was to death, but he was beginning to sense that something was happening. Swallowing my emotions I calmly responded, “Son, we all die. That is the price of life. But you, and I … and everyone else … will continue to live after our bodies are laid to rest. What really matters it is what we do with our time, and you my sweet son have done great things. You are a good, good boy and I’m so proud of you. Don’t worry about tomorrow, let’s live for today and do the best we can, okay?” Mitch nodded his head and we began to talk about the next Lego base we were going to build.
Since that exchange in the car Natalie and I had a few other sacred conversations with our son during the weeks leading up to his passing. The closer Mitch came to death the more I started to see in him an adult soul clothed in a 10-year-olds broken body. Sometimes it was difficult to distinguish what I saw with my mortal eyes from what I was beginning to see with my spiritual eyes.
I remember telling Mitch at one point “You are not your body. We are so much more than we can see with our mortal eyes.” Mitchell’s countenance told me he was not only absorbing my words, he was beginning to see things as they really are … that life doesn't end with death.
Author Dean Koontz wrote, “Intuition is seeing with the soul.” I love that.
And, over the years I have noticed that without intuition, without eyes to see, it is easy to get wrapped up in the thick of thin things. When I look back on my experience with my son I can see that while Mitchell’s spiritual eyes were opening, so were mine.
With all that was happening I realized then [and now] that Mitchell’s soul is older than I know. But I miss my 10-year-old. So very much. What I wouldn't do for one more day, one more hour, one more second with my boy.
And while my mortal eyes are clouded with tears - ever searching for my son - I have other eyes that see past the sorrow. Eyes that see clearly. Eyes to see.