About 14 years ago I started a storytelling tradition with my kids that would only require music and one’s imagination and then the universe was at our fingertips.
On my iPod are playlists that contain all manner of movie & video game scores in random order, across every genre. Often, after their teeth were brushed and my kids were tucked snugly in bed, I would turn on a playlist and narrate random stories out of thin air – and my kids were the heroes. Because the music would shape the narrative, none of us knew where we were going. Each night was an untold adventure waiting to be explored and as lights dimmed and the music began to play my children and I would be swept far away in story. Suddenly the bedroom walls crumbled to the floor and the ceiling unzipped and they saw a night sky with strange planets, or suddenly they were crossing a vast field of grass on a journey surrounded by storms that were closing in, or they were atop a glass-covered skyscraper in a mega-city about to launch their jet-pack. Wherever we went it was magical and unexpected.
Before long this practice no longer soothed my kids to sleep but excited them – instead of getting tired they would sit on the edge of their mattress, with hearts pounding, wondering what was next. Sometimes they would argue “No I want to be that guy!” It wasn't long before they began making plot requests and wanted to help shape the story.
These journeys of the mind are always fun. So much so, I even do this with my employees when we are driving long distances. Each of them take a turn telling a story on the fly in response to a song. They don’t get to practice or rehearse, they only respond to the music in real-time – and as the tempo changes, so must the story. Suddenly 100 miles feels like 5 minutes and that we've read 300 fascinating books in the blink of an eye.
I loved this tradition with my kids. I don’t do it as often as I used to. I tried it again with Ethan about 3 weeks ago. We were driving home from his lacrosse practice and I told him a story against the backdrop of song. He was quiet and inside I wondered if he thought I was being an absolute geek. At the end he looked at me, paused and said, “Dad, that was awesome.”
On the night of this photo Natalie and I had just tucked Mitch in. Faithful Marlie snuggled near his feet and he was set. Then he asked me in a soft voice, “Dad, will you tell me a story?” My eyes instantly filled with tears and my throat swelled. “I would love to tell you a story, Mitch.”
I ran to the next room to get a speaker and iPod and for the next 10 minutes Mitch and I went on adventure together. Once again, the ceiling and walls fell away and we were transported to a magical place. We started in an ancient forest where the trees could whisper secrets of a time long gone; we could see the night sky and a fabled moon that was only visible through the forest trees. We traveled vast distances together and Mitch was the hero. All along I kept thinking how in real life this little boy was an even greater hero to me. In life, Mitch couldn't jump great distances nor did he wield physical strength like he did in my stories, but in every way that mattered he was stronger and nobler than the sum total of every character I could imagine.
As my story concluded I knelt by Mitchell and told him, “Son, even though you were the hero in this story, you are my real-life hero, too. You are the most amazing young boy, Mitch. I love you.” He asked why I was crying and I told him it was because sometimes parents have so much love in their hearts for their children they don’t know how to express it, and they cry. I told Mitch that was the magic of being a parent: you create the most amazing miracle of life and watch it grow, develop and become. Parents cry because they love; and love is the most magical power on earth. Love heals and protects, it renews and forgives, it lifts and defends … love gives meaning to life. To know love is to know God.
This was the last story I told Mitch. Not many days would pass before everything in our world began to unravel and we would experience the most sorrowful story of all. A story that would break my heart. Forever.
I have traveled the universe and back with my children and we have visited every age we could imagine, even the age before time. I have discovered parenthood is the greatest adventure of all. It’s a story that needs no soundtrack to be told; a story that frightens and enlightens us … and a story of love and service that never gets old.
I pray that at the end of my days, when my story is ended and I take that final journey to that place beyond the hills, that my son will be the first person I see. And I will run to him and give him a father's embrace. For I love him. I miss his kind soul, I long to see his sweet face.
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.
This was Mitchell’s first morning after being released from the hospital to die at home. Though in the comfort of my own home and bed, I didn't sleep well that night – I wept and I prayed for my son to be delivered from the jaws of death. If ever there were a time for hope, this was it.
As I walked into my son’s bedroom I couldn't help but notice how the morning sun shone softly through his window and warmed the color of everything … as if to promise that not all of life is dark and there is cause for hope.
“For if we, being human, can love our children so intensely, how much more might He love us? I can scarcely imagine. I can scarcely take it in.”
I asked Mitch how he slept and he said in a soft voice “I slept great, Dad.” He was home – and that is where he loved to be. Until this moment I had never considered it possible to be in both heaven and hell at the same time. Yet there I was, in the middle of both… a beautiful agony.
Mitch was tired and weak so I helped him sit up while Marlie was still in his arms. She looked at him for a moment and then gave him a soft kiss. Mitch smiled and hugged his puppy close to his face. He loved having his own baby dog. Marlie had a mission of mercy to perform and for whatever reason she seemed to forget she was a puppy whenever she was near Mitch. This little dog that was no more than 3 months old gave my son much comfort.
I’ll never forget, despite my profound sorrow, the feelings of hope and peace I felt this day – and many days thereafter. Reflecting back on our time with my son on hospice I have come to understand those moments of peace weren't a promise of deliverance from hardship, but a faint whisper … a spiritual glimpse that all was as it was meant to be and that there were greater forces at work than I knew. So I learned to put faith in that.
I learned early in my life it is not reasonable to hope for a life free of hardship and sorrow. I cannot hope to be the only human exception, exempt from the sorrows of this life. But I can hope the tempest of sorrow and grief in my heart will one day calm. I can hope to find meaning, to search for understanding and experience growth. Those things are eternal and the things for which we can truly hope.
I also hope to see my son again one day. When I do, I will run at reckless speeds to hug him. I will wet his face and his neck with my tears and I will tell him how much I love him. And perhaps, when I turn around I might see the Father of my soul do the same to me.
I hope.
For if we, being human, can love our children so intensely, how much more might He love us? I can scarcely imagine. I can scarcely take it in.
I remember this moment as if it happened yesterday.
It was November 9th, 2012. We had just left the hospital and we were faced with the mounting reality things were not going well for our son. Sensing things were deeper and more perilous than we knew, I asked our cardiologist that day at what point Mitchell’s condition was beyond his experience. He paused, thought a moment, and then said he was on the very edge. We asked that his case be handed over to the transplant team for consideration – and we were scheduled to meet with them two weeks later. Knowing my son’s diagnosis would was almost a non-starter we gave it our best shot anyway; we had high hopes, but low expectations. Mitchell was denied.
As we drove home that evening the sun’s warmth flickered like a candle against the cold November wind. Any glimmer of hope or a way out seemed to set with the sun. Everything was getting darker and I sensed we would soon face some cold realities regarding our son. As we left the parking lot I remember looking to my wife who had a look of controlled panic and deep concern. This was the day we first walked on Jupiter. Everything seemed heavier … the sky was strange, the air was thin … everything was alien. By the time we arrived home the sun hid its glimmer behind the hills and the sky seemed especially dark – as did the sorrow in our hearts.
“... on that day I journey to that place beyond the hills, that place my son lives, that place I now long to be – I will see with new eyes there was always light … only light I could not see.”
We prayed a lot that night and every night thereafter. We earnestly sought a way out. Hardship and darkness came to us despite our heavenward pleas. As Mitchell’s health deteriorated the days grew darker still until the night my beautiful boy passed away - when nightfall had truly come and everything was darkest. I will post that essay “Nightfall” another time.
Perhaps the more tempting and punishing aspect of grief is looking back and entertaining the endless, taunting list of “what ifs?” That unreasonable list of things you could have done or should have done … where everything seems obvious under the light of hindsight. But that list of “what if” is counterfeit.
I have a colleague with whom I work who often makes reference to Einstein’s “circumference of darkness.” Einstein puts the case boldly that as our knowledge expands, so does the circumference of darkness that surrounds it. What’s more, my colleague wisely points out, when exploring new territory “we don’t know what we don’t know.” Such was the case for my wife and me as we stumbled and fumbled and did our very best to love and care for our son.
Even still, I look at photos of my son last year at this time and it feels like yesterday … yet at the same time a world away. I want to jump into those photos, back in time, and hold my son like I never have and look him in the eye and tell him how much I love him. I would have drunk the moments in more deeply and I wouldn't have wasted a second. That is what I tell myself. Yet today, being human, I still waste my seconds and opportunities pass me by. But I try. God knows how much I try. And that list of “what ifs”, however counterfeit and scattered with lies, remains glossy and deceptively wise.
But I know better. We were true. We did the best we could and all we knew to do.
At some point during my struggle of the soul, when everything seemed darkest, I felt a spark of light … a flash of insight that came rushing to my mind. It occurred to me that God almost never delivers us from our sorrows, but He will deliver us through them and we will be all the better because of it. I began to wonder how often, because suffering doesn't always ease, we confuse God for not listening to our prayers when in reality we’re the ones not listening to Him. Neither do we look. Sometimes it is dark only because we close our eyes.
Finding light in dark places; it is easy to say from the sidelines and sometimes it’s bewildering to do. But I have learned in darkness that God is there beside us, it's true. And on that day I journey to that place beyond the hills, that place my son lives, that place I now long to be – I will see with new eyes there was always light … only light I could not see.