I loved it when Mitch sat on my shoulders as a little boy. When I look at this photo I can almost feel his little hands on my face again and my heart is awash with love. But then the tears come – I cannot stop them – and they wet my face and remind me of what once was, but is no longer. I still close my eyes and reach to feel his little hands on my face sometimes.
Sometimes.
On this day Mitch asked to sit on my shoulders so he could peer over the fence in our back yard and wave goodbye to his big sister who was walking to school. The fence was just tall enough that I couldn't see over it, not even on my tiptoes. But once on my shoulders, Mitch could see the brave new world just over the fence. A world he could always hear but couldn't see. Once on my shoulders he would tell me the things he saw. He would yell out as if to say “Dad, this is awesome! If you could see what I see!”
“A bus!” he would say excitedly. “A twuck!” with another excited burst. To little Mitch the world just over the fence was a smorgasbord of sights and sounds that captured his imagination. When he saw his sister come into view he would bounce up and down on my shoulders and point to her yelling, “I see her! I see her! I wuv you Ash!”
Though I couldn't see his smile with my eyes I could feel his smile with his hands on my face – and my heart grew a foot or two. I then grabbed his hands and pressed them into my face as if to hug him. These are the moments I live for. These are the moments that warm my heart and calm my soul.
My sweet wife, who recognized I was always behind the camera and almost never seen in a scrapbook, took some photos of us that morning. Photos of Mitch and me are rare by comparison to the number of photos I took of everyone else. So I treasure these photos with my son greatly.
We would discover a few weeks from this photo Mitch had a catastrophic muscle-wasting disease that would hurt him, cause great hardship, and eventually take his life. I cannot count the nights I sat at our kitchen table weeping for my son, reading everything I could to understand DMD and trying to prepare for the inevitable journey through the wastelands of grief and sorrow.
I was unaware we were nearing the end of an era for our family. An era of relative peace and ease; an era free of the sorrows we would soon know and then carry the remainder of our days. Oh, I had become acquainted with the sorrows of death – for my father passed when I was 19. But a father is no son; and losing my child has broken me in ways I never imagined.
My son’s journey has taken me on a most unexpected path – a path I was scarcely prepared to sojourn. Were I given the choice I would have taken any path but this. For I have nearly drown in a sea of sorrow, I have stumbled through my wilderness of grief, and I have peered into the depths of the abyss. The loss of my son has become my Everest and I intend on reaching the summit.
Perhaps after a trillion of my own tears have fallen to the earth, when my weary legs and broken heart are about to collapse … when I reach the summit of my Everest … perhaps, then, I will begin see what Mitch sees. A brave new world. A world I can hear with my heart – but I cannot now see.
Night had fallen, and so had our hopes for one more day. My weary, tattered son lay in his bed unable to move and barely breathing. Within the last 12 hours his heart had greatly enlarged - causing his chest to protrude. He looked deformed. It was disturbing to see. The candle of life was dim and flickering by the winds of change. Even though night had long since fallen, more than the sky was dark. I had dozed off on the floor of Mitchell's room, next to my wife. As I was beginning to drift into a deep sleep I awoke with a distinct impression to tuck my son in - something he asked me to do every night.
"Hey Mitch ..." I said in a soft whisper, "I'm tucking you in, just as you like it. I love you son, so very much. Don't be afraid; remember what we taught you. Everything is going to be okay."
I'm told that hearing is the last thing to go for those who are dying. For reasons I have earlier posted I know my son heard me. Those were the last words Mitch heard in mortality. Within 30 minutes of that gentle whisper and kiss on his face, my precious little boy passed away. I hope he wasn't scared. I hope.
We've also been told that children who are about to pass away often wait for their parents to leave the room or they linger for permission to go because they don't want to hurt or disappoint. Knowing this, I wanted my weary son, who fought valiantly to live; who always wanted to make us happy to know that we loved him and that all would be well. No sooner had I drifted back to sleep that Natalie got up from the floor to administer Mitchell's medicine, which he was now receiving every two hours. I'll never forget the sound of Natalie's voice. Her words pierced the silence of the room like a samurai sword through paper: .... "Chris." Suddenly, with the thunder of 1 million exploding suns, I awoke that instant only to see a mother's face that looked confused, scared and deeply bereft. I got up from the floor by Mitchell's bed and placed my hand on his chest. Nothing. Our precious son, our broken baby, was gone.
My sweet wife sat by her little boy, sometimes draping over him as if to comfort him, holding his lifeless hand. She stayed there and wept for a few hours. She never left him - and deep inside she wished he had never left her. The look of anguish on my tender wife's face broke my heart. Baby Marlie curled around Mitchell's head earlier that evening as if to comfort him and never left his side. Mitch loved his puppy and always found her a source of comfort.
We could scarcely believe our eyes. Lying on Mitchell's bed was the form of a little boy we raised since birth and loved with all of our hearts. His body was still warm and it seemed as if we could just shake him a little as if to wake him from a deep sleep and that all would be well. But Mitch had fallen into a sleep from whence there is no return.
As each hour passed we could feel his arms and legs get colder. Soon, only the center of his chest was warm and it was cooling quickly. Then his body started to change. At about 3:45 AM I called the funeral home to pick him up and they were at our home within an hour. I asked them to hurry because I wasn't sure I could watch my son's body continue down the path it was heading.
Processing the death of your child is something of a bi-polar experience taken to the greatest extremes. One moment you feel peace then suddenly you confront feelings of horror – the likes of which you've never known.
With all the lip service we give our religious beliefs, there is nothing so exacting as to see your child die and then to peer into the dark abyss of death. I have been taught that: "Faith, to be faith, must go into the unknown ... must walk to the edge of the light, then a few steps into the darkness." My son's journey, Mitchell's Journey, has forced my wife and I to step into the darkness. A darkness that is as heavy as it is pitch.
Yet, I've discovered something in all this darkness. Once I allowed my spiritual eyes to adjust and look upward, I started to see the stars. Against the backdrop of all that is black and frightening I can see little flecks of light, tender mercies that were always there but I didn't have eyes to see them. And the accumulation of these tender mercies present themselves like heavenly constellations so I can find my way. If I look down or to the side, all I see is darkness. Like ancient navigators who looked to the heavens for bearing I can see the fingerprint of God in all that has happened and I now have a sense of direction. I know we're not alone.
To be clear, it is still nightfall and my heart is heavy with a sinking sorrow. There are days that are blacker than black and the waves of grief threaten to pull me under. But when I look to the heavens I can see.
I can see.
It was difficult to get Mitch to eat. His appetite took a significant dive mid-December and with few exceptions it never really returned. His perfusion was so poor that, even if he felt like eating, his digestive system couldn't handle much of anything. Toward the end my son would throw up whenever he ate. That was so hard to see. His body, already weak and frail, struggled to recover after each violent episode.
Natalie had prepared some soup for Mitch and I asked if he wanted to eat in bed. This time he wanted to walk to the kitchen so I held my sons hand as we carefully made our way. He was tired but determined to be independent as long as possible. I love him. Mitch arched his back as he walked to keep his balance because DMD had already stripped his strength away. He was getting so frail and his interaction with the world increasingly brittle.
Ever since he was a tiny little boy we had a very special manner in which Mitch and I held hands. As I softly held his hand escorting him to the kitchen, he moved his hand to hold mine in our special way. The lump in my throat, which never seemed to leave, began to grow. I smiled softly at him and put on a brave face but inside I was falling apart.
Mitch didn't get sick this day – for which I was grateful.
As I looked at my little boy I couldn't help but see something else. I saw my brother. I didn't see someone who looked like one of my brothers, I saw a little boy who was my brother. Toward the end I saw in Mitch things that startled me … I will write of those another time.
I have spent much of my life contemplating the age of a soul. How old are we really? No one really knows, I suppose … at least not here. But when I am quiet and thoughtful I get a sense we are older than we know. And when I think of my son, my brother, I get the recurring impression I am Mitchell’s younger brother and that he was teaching me.
Whenever Mitch said goodbye - even if only for the day - there was always a strong subtext with him that said, “I can’t wait to see you again.” On this day Natalie was rushing our kids to school and I was able to hug them and then wave goodbye from the driveway. Mitch sat in the passenger seat and looked back at me with his little fingers pressed against the window. His loving expression said, “Dad, I can’t wait to see you again.” As our old, beat-up minivan (a vehicle that sounded like a pirate ship while turning corners and was hanging together by duct tape and a string of luck) drove down the street and out of view I realized at that moment I was so blessed … am so blessed.
I had one of those clarifying moments when you are reminded it isn't the cars we drive or the things we own that are our greatest treasures – but the little people we usher into the world; the children we create and instantly love. That is the greatest treasure of all.
This image reminds me of the importance of minding the corners of life. I wonder how many magic moments I have missed because they happened in the corner of my eye and I wasn't paying attention. But this is what I do know: if I wasn't in this moment with my son this sweet exchange could have passed me by like a speeding bullet.
A few years ago a very large fire threatened to destroy our neighborhood and home. Everyone had evacuated and I chose to stay for a while to document the impending destruction of our home. If it was going to go down, I at least wanted to take photos of it. It was about 2 AM and the fire was raging just a few hundred yards away from my property. Fire fighters were everywhere and combing my back yard to map out their defensive positions. While grateful they were toiling to protect our home, I had become numb to it all – my priorities had changed and I let go of it all.
I walked around my home and took photos of everything. I wasn't interested in our things, none of that mattered to me. Instead, I was more interested in the arrangement of our things. The pile of children’s books in our living room, night stands and drawers that were home to my children’s personal treasures, the careful arrangement of stuffed animals, toys in the bath tub, a large basket filled with Nerf guns, my daughter’s art projects at various stages of completeness – this is what I wanted to capture. I wanted to capture the corners of life we often took for granted or ignored. Suddenly they became the most interesting. Everything I shot told a story about my family and kids – and that was more valuable than the sum total of our stuff.
So on this morning, about a year after the fire, when my wife and kids were speeding off to school, I focused on the corners. And as fate would have it, out of the corner of my eye and in the corner of the car window was my sweet son saying “I can’t wait to see you again.”
With all that I am, I can’t wait to see my son again. And when I do, I will fall upon his neck and kiss him and beg him never to leave me again.
The glass between us has become opaque. And I vow to live a life that, if God allows, the veil between my son and I becomes transparent – if only for a moment – so I can say to him “I can’t wait to see you again.”
And between now and then I have my other children to love and many corners to keep.