The days were long but the nights were even longer. With the prospect of days to live, weeks if he was lucky, we did our best to keep our chins up and held our tears at bay for times he was napping. Sometimes we had to excuse ourselves from the room and walk down the long half-lit hospital halls and weep because we couldn't contain our sorrow any longer.
To Mitch we were the strong parents he knew and trusted … ever filled with answers, healing balms and love. But inside we were children ourselves frightened of what tomorrow might bring; frightened by the invisible monster that wasn't just under his bed, but in it.
The doctors had stabilized Mitch with Milrinone, a drug that helped his weary heart find rest. After a few days they wanted to see if Mitch could be weaned from the drug. It would take a little over an hour before the effects of being taken off the drug made manifest. We simply had to wait and see.
Just as the doctors took Mitch off Milrinone my children came to visit – which was a welcomed distraction. My mother, who had come to care for our kids at home, sat on what appeared to be a rolling chair. If you weren't paying much attention you wouldn't notice it was in fact a portable toilet. As we sat and talked for a while Mitch started to sing a line from a popular YouTube video “Sittin On Tha Toilet” – which song he loved to laugh at and sing. We instantly burst into giggles because of the way sweet Mitch was drawing attention to his grandma. He was so observant, so very funny. For the next hour Mitch was smiling and we played word games and laughed together.
We had just taken a bedside family photo (seen in my most recent post OUR SEARCH FOR HAPPINESS). Mitchell’s sense of humor was in full bloom and I was startled by his intelligence and his renewed sense of comedy. We enjoyed a moment of pure bliss – the stuff rich lives are made of. Mitch was off the drug and seemed to be doing fine. Could it be? Perhaps this was a glimmer of hope; maybe the doctors had it all wrong … maybe they made a mistake and his heart wasn't really failing. For a moment we wondered if a catastrophe had been avoided … that perhaps we could resume life as usual as an invisible family who just wanted to be together.
Then, in the blink of an eye something changed and it seemed as if a dark cloud rolled between us and the brittle bliss we knew moments earlier. Mitchell’s countenance changed and tears filled his eyes. In an effort to lift his spirits, Laura-Ashley handed him a cupcake she earlier made for her little brother. Mitch wanted nothing to do with food. It was clear he was crashing and getting very sick in a big hurry. We immediately told the doctors to resume the medicine so our boy would feel better. Our hopes for the future were dashed.
Suddenly I saw with horrifying clarity the pebble upon which Mitchell’s life clung. The abyss that was inching to devour our son finally had its mouth gaping wide open and roaring swallow him up. I fought back the tears as I saw my little boy suffer. Inside I was a little boy, too – I was helpless to save him and desperate to trade places with him.
Two days later we would make our final journey home so Mitch could live out the remainder of his days in the comfort of his own room and in the arms of our love. Soon, Mitchell’s weary, valiant heart would grow fainter until it suddenly stopped. And we would find ourselves with weary hearts of another kind. Over the coming months and year our hearts, which carried the burden of grief and sorrow became wearier still.
I suppose it’s only human to wonder why a little boy who was so innocent and pure was made to suffer and die. Might it be better he live a full life and do much good in the world? What does God have in mind? What does He see that I do not? Surely I cannot comprehend the infinite with my finite mind – but I have a spiritual assurance that transcends mortal experience. Still others blame God for their sorrows and turn their already weary hearts away from the very thing that can truly give us rest.
At least for me, I have come to realize it is more productive to stop asking “why” … to dispense with the idea that I am entitled to a life free of sorrows, as if I should be the world’s only exception. Rather I ask “what am I to learn from this?” Perhaps when I lack insight it’s because I’m not asking the right questions or I’m not listening. The invitation to us mere mortals is to seek and we shall find - to knock and doors will be opened to us. But we must do the seeking, we must do the knocking.
Spiritual assurances aside, my heart remains weary with sorrow. I miss my little boy … I see his empty bed and little shoes and I weep. Though I know Mitch is in that place beyond the hills, I want him here with me … in my living room and within my loving embrace. Grief is such an inferior word.
My heart is weary with sorrow, my soul in need of rest. Though I stumble over pebbles, each day I do my best. While I travel Mitchell’s Journey, without him by my side, I can see the path now … I can see with Heaven’s eyes.
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.
As we walked out of the viewing room with my two boys pushing Mitchell’s casket down the hall, I found myself terrified to turn the corner and walk in the chapel where hundreds of people waited for the funeral to begin.
When I was 18 years old I did the same thing, only I was following my father. I had never really been to a funeral before. I mean, I've been to funerals as a child, but I was never really there because those who passed were people I didn't know and, as young boys, playing with long-lost cousins was all we ever seemed to care about. So suddenly I found myself actually there … at a funeral … following my father who was a broken, lonely man and had become a dear friend to me. I had grown to care so much about him and he was suddenly gone. When we entered the chapel everyone rose to their feet out of respect. I was unprepared. I didn't know that’s what people do and I was taken aback by all that came in honor of my father. Through tears and blurred vision I made my way to the pew. And thus began my first journey through the maze of grief.
So, 22 years later I found myself once again at a funeral … reluctant, heavy with grief, this time following my precious son. I was afraid to turn the corner because I knew what would happen and I didn't think I could witness so many rise to their feet in honor of my broken son. By my side was my tender wife who was also broken and I didn't know how to help pick up the pieces and put her back together again. How I wanted to …
As we were about to enter the chapel I desperately wanted to stop the procession, pick up my son and put an end to the nightmare … to call off the joke or the misdiagnosis because surely there had been a big mistake. Like a horrifying dream from which I couldn't wake, a part of me wanted to race him back to the hospital and infuse his body with warm blood and start his weary heart again. After all, he was just with us days ago – why couldn't he be with us once again? I was desperate to hold Mitch, and kiss his neck and his face and love him like I didn't know to do … until this very moment. These are but some of the games the mind plays when processing the impossible.
It seems to me that many good people on the other side of grief, the observers, can sometimes have it all backward. Somehow they’re tempted to think, as I used to think, grief is greatest leading up to and at the moment of death … perhaps a few weeks after. But all of that is easy, by comparison. Grief, with all its weight and fury, takes its crushing toll in the emptiness that remains, in the dull silence long after our loved ones have gone.
We are fast approaching the first anniversary of my son’s passing. I still have much to say about grief and sorrow, faith and family, love and loss. I have much to say about God and His tender mercies – for we have seen many. And though I cry out in grief and sorrow [and oh how I cry, and oh how I grieve] I thank God I was blessed with my son.
Some of what I have written and will soon post will be the rawest of my writings yet. They will be hard and will surely draw the criticism of armchair pontiffs and self-appointed moralists. But this is my story and my beliefs – and I share them without apology.
Lest anyone wonder that we wallow in grief, rest assured where we stand today is different than where we stood last week. Each day is a struggle, each night laden with grief. But we are turning corners, step by step, and making progress week by week.