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.
About seven years ago my in-laws invited our family to join them on a trip to Hawaii. Mitch was little, Wyatt was a toddler, and Laura-Ashley and Ethan were young and full of energy. The trip was a gift, but the experience of spending time together was an even greater gift. Today, the memory of that time together is the greatest gift.
Mitchell’s faithful Aunt Sonya came, too. Whenever possible she put Mitch under her wing and helped him enjoy life’s treasures before the hour grew too late. She knew the troubles that would soon come to our son in a way we did not. Her profession gave her a unique vantage point as she saw the biological horror show of DMD first-hand. She was careful to never frighten us but I could sometimes tell by the look in her eyes she was holding back a little – she knew the storms that lie ahead. But we had today.
We spent the better part of the day swimming, making castles and rolling in the sand. Grandpa even helped Mitch catch a few waves on a boogie board. He loved that. Mitch was so cute and playful and was always concerned about getting sand in his cute little bum. The water was warm as a gentle bath and I finally understood why some call Hawaii a paradise. As the day was yawning to an end I noticed Sonya and Mitch on the shoreline watching the sun as it slowly set. Mitch loved sunsets. I remember thinking to myself when I took this photo that Mitch was lucky to have Sonya. And I thought to myself how lucky all of us were to have him.
I wonder what my son was thinking as he looked into the ocean, as far as the eye can see. I can still hear the surf crashing softly and the ocean wind as it whispers through the palms.
As I was meditating over this moment earlier this morning my wife came into my office and handed me a health insurance form to sign. I asked what it was for and she said it was to verify the termination of Mitchell’s coverage. In an instant my hands began to shake and my heart sank to the floor as we took one more step into our new, painful reality.
As far as the eye can see,
grief stretches vast, and deep
even to infinity.
But there is more to grief
than pain and sorrow,
it is the longing to see my son
on some tomorrow.
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.
Last October, almost at this very time, we took our kids to the mountains to shoot some family photos. The air was crisp like an apple and carried an aroma of pine and cedar, a hint of dirt, crunchy leaves and soggy wood. Fall was in the air and Mitch loved it. And because he also loved smells … the mountain air seemed to be something of a gift to him that day … as if to offer a loving farewell to a little boy who would soon go on a journey far from this place.
Mitch loved the seasons and the transformations that came with them. With each season Mitch became excited for what lie ahead; the promise of the summer sun, the chill of winter snow or the renewal of spring blossoms … he loved it all.
In almost every way, Mitchell was just like me. He loved everything I loved. What’s more, in ways that are difficult to describe, he often felt like my echo.
So, we got busy taking a few family photos. It isn't my practice to take many portraits because I prefer raw captures of life unrehearsed. But from time-to-time portraits have their place. We took one of my favorite family portraits on this occasion and I will treasure it the remainder of my days. I will post it soon.
While we were busy experimenting, Mitch asked if he could take some photos with one of my cameras. By this time in his life DMD had weakened his arms to the point that it became difficult to lift the camera to his face. So I mounted my camera to a tripod, stepped aside and let Mitch take the lead. I took photos of Mitch shooting his mom and sister and I thought he was so cute directing the girls. Mitch took some great photos that day. Oh, how I love him.
Whether on his own or in some class Mitch always startled me by his insightfulness. Ordinarily shy and reserved, he had a mind that was deeper and more thoughtful than he would lead someone to believe. Once a week he attended an art workshop in the evenings. Mitch often resisted because he just wanted to be in the comfort of our home. But Natalie, being a wise parent, knew what was good for her child wasn't always comfortable or easy. So, she lovingly insisted that he go – encouraging Mitch to learn and grow.
He always seemed to leave with a frown but come home with a big smile. As his art portfolio grew in size – so did his confidence. Mitch, like my other children, was experiencing a transformation from something good into something greater. As with all things worthwhile, that kind of growth required work, leaving his comfort zone and persistence.
My wife teaches me about parenting every day. As a parent, her choices are instinctively wise and forward-thinking – ever mindful of the transformations our children are experiencing. I have much to learn from her.
Transformations. That is the singular reason we are here on earth, I believe. We’re not here to build homes, accumulate things and eventually die. We’re here that our souls might learn and grow – to transform from something good into something much, much greater. And growth can be uncomfortable, scary and painful. Oh, it can be painful.
Toward the end of his life I began to sense that Mitchell was more than he seemed. As I mentioned in my funeral address, I began to look upon my son with spiritual eyes and sensed that beneath the veneer of a 10 year-old’s broken body was a spirit much wiser and older than I realized. Mitchell has transformed into something I can no longer see or feel. But I know he lives.
My wife, who is spiritually wise always teaches me without trying, seemed to instinctively understand that “what is good for us isn't always comfortable or easy.” Despite his protests, she took Mitch to those workshops … and he grew. I admired my wife’s loving insistence and watching Mitchell’s transformation.
The Father of my soul has taken me to a workshop – the hardest of all workshops. With tears in my eyes and a trembling heart, I hope to follow my son’s example and return with a smile on my face and a transformation in my soul. Nothing of value comes easily, and I pray that I’ll never lose sight of what my wife so humbly taught me: “what is good for us isn't always comfortable or easy.”