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.
I stumbled across this photo recently and was swept back to this very moment my weary son leaned into my arm – like he so often did. For a moment I forgot about our troubles. Everything seemed normal and dreamlike. I couldn't believe it … it was all a bad dream. That was until I saw the cables coming from Mitchell’s arm … cables that reminded me my dream was in reality my worst nightmare.
Baby Marlie, ever the faithful comforter, sat patiently and lovingly on Mitchell’s lap. I was in the presence of two tender beings that were meant to be together – even if only in passing.
At that moment I couldn't help but think these two little ones were fellow travelers on their sojourn through life: one sick little boy about to die and would travel to that place beyond the hills, and a newborn puppy who had just arrived. They were unaware they were passing each other in opposite directions, but for a moment they gave each other comfort and I thank God for that. Although I experienced the absolute horror of losing my son, I witnessed a tender mercy for which I will be forever grateful.
Since my son’s passing I can’t help but think we are all travelers: some travel the straight and narrow, others take crooked paths, while others get lost in the wilderness. Some go nowhere. There is a saying, “Beware the man or woman who boasts 20 years’ experience, when it is the same year repeated 20 times.” I hope I’m always travelling forward – never backward or in circles. Still among the travelers are those few of whom M. Scott Peck wrote, that take the “road less traveled.” Whatever journey we find ourselves, we are travelers just the same. Sometimes we are weary travelers.
I have discovered on my own journey the work of grief is the hardest work I have ever known. It is emotionally catastrophic and everything is a wasteland. In truth, there are some days night can’t come soon enough. For my pillow beckons me and offers rest and escape from the sorrows that weigh heavy on my mind and heart. There are many nights long after everyone has fallen asleep, I wet my pillow with my tears. Tears for my son. Tears for my broken-hearted wife … and tears for my children who miss their brother with all of their hearts.
As a traveler who stumbles on a broken road I find myself weary and very much in need of rest. I don’t rest to run from my troubles. I rest to re-calibrate. I learned years ago we cannot run from our troubles, at least not for long. At some point, if we don’t work through them, our troubles will multiply. Rest we must. But work we must do, also.
A few years ago I learned baby chicks about to hatch must break through their shell on their own. Any attempt to break the shell for them, trying to make their life easier, is not only counterproductive but often fatal. The very act of their struggle gives them the necessary exercise to build strength so they can survive on the outside. What’s more, the time it takes to break free is also vital for their bodies to adjust to their new life. If done hastily, if they are robbed of their struggle, they often die.
Like those baby chicks who struggle to break through, at some point I will come out on the other side of this stronger. While I might be tempted to pray to God for relief … that He might make things easier, I know better. Instead I pray that He gives me strength equal to the task - for it is in the struggle we are made stronger.
I am a weary traveler on a broken road. I don’t feel strong. I often collapse. But like those baby chicks that are destined for a life on the other side of struggle, I will fight on. God willing, I will fight on.
I remember sitting under the stale, moldy wood of an abandoned tree fort deep in the back-woods of Minnesota. It stood high in the trees like an ancient ruin – covered in summer moss and swaying softly in the breeze. I was a young boy, about Mitchell’s age, and finding such an unexpected fort was magical. It became a place for us to disappear from the world … to dream of things and imagine the future. One summer, while sitting in our fortress in the trees, my friend and I asked each other what we would do if we only had a day to live. That was the first time I can remember asking myself that question. Being young and easily entreated we would talk of shopping sprees, all-you-can-eat candy, and driving Ferrari's.
Even in college I remember stumbling across that same question with friends. Our answers were different then – but the question remained.
Fast-forward about 20 years and this reality barged its way into my life like a terrifying home invasion. As far as we were concerned Mitch was home for a day and might die at any moment. So we lived each day as though it were our last because we couldn't afford not to.
For 28 beautiful but agonizing days, we thought Mitch was only home for a day.
My daughter took this photo shortly after Mitch came home. Moments prior he had reached out to hold my hand, our fingers interlocking and asked in an almost-whisper, “Dad, will you sit by me?” I remember him snuggling his face up to mine. I can still feel the warmth of his skin on my face, his shallow breaths on my chin, and his love bursting in my heart. Sometimes, when I think back on this moment, I reach to my face as though I could touch his – but then the dream ends and he is gone.
I’ll always remember how he snuggled up to me; I just closed my eyes and wished that I could freeze time or that I could steady his failing heart. At that moment I didn't know that Mitch was smiling – I only knew we loved each other. And that was enough, and more.
Home for a day: it was a wonderful blessing and a terrible burden. This experience was (and is) so difficult to endure. Eleven years ago my tender son didn't exist, and I was quite content without him. But now that I've had him I cannot imagine a life without him; and here I must find a way. I pray to God that my heart finds a way.
Mitchell taught me to appreciate each moment as though it were my last. I don’t mean to sound so dramatic as to peer dimly through the window of a funeral home, living each moment in fear of death. What I have come to understand, with exacting clarity and regardless of circumstance, is moments are fleeting. The moments I had with my kids last weekend are long since passed – I don’t get to go back there.
So whether I face death or more life, each moment is my last.
All too often I hear about the perils of distracted driving – but I wonder how often we think about distracted living. Perhaps being distracted is the root cause of much of our troubles.
Mitchell, being home for a day, taught me to remove the distractions that would seem to take life away from my life. And when I removed the distractions and lived in the moment, rich were the blessings and treasured the memories.
A strange illusion, indeed, to think that breathing is living.
Mitchell's health took a significant dive today.
We opened some of the packages that were sent to him and he smiled softly and perked up a little and then asked if he could lay down. He didn't last long. As we helped him lay down his arms and legs were floppy. He said to Natalie and I in a slow, slurry voice .... "I don't think I can survive." We both sat there stunned ... and quietly wept. Mitch all but passed out. After a few minutes, he started to come to and said "it's okay, Mom." As we sat in the quiet of our sorrow Natalie held Mitchell's hand and kissed it, bathing his hand with her tears and told him how much she loves him and that everything is okay. He softly smiled and nodded and drifted off to sleep.
I found it so interesting that Mitch, in all his own suffering would try to comfort and reassure his mom.
I wanted Natalie to have some alone time with her baby so I suggested she cuddle with him and comfort him while I left the room.
Our precious boy hangs from a tattered thread that is ready to snap ... and soon he will pass from this world to the next.