It was so hard to see our son slip into oblivion. I’ll always remember how lovingly Natalie held Mitch as he struggled to breathe and keep balance. Mitch was taking medicine to erase from his mind oxygen hunger – without it he would be panicked, breathless, and gasping for air. It was a medicine of mercy. As Mitch descended further into the abyss he began taking other medications to erase from his mind the pain of organ failure and the panic of dying.
We were not prepared for such things; we knew how to make macaroni and cheese, play UNO and swim in ponds. We knew how to laugh and play, do homework and tell stories at bedtime. We didn't know how to manage the symptoms of death – let alone watch our little boy die.
My dear wife demonstrated a bravery and steadiness that humbles me to my core. She was soft and tender to Mitch and never did anything to scare him – even though in her heart she was terrified beyond measure. Occasionally I would find her in our closet weeping next to a pile of tissues – but around Mitch, she was steady and sure.
Although my sweet wife and I did our best to prepare for the holocaust of losing our son, I discovered it wasn't possible to intellectually or emotionally prepare for such a loss. Yes, I knew it was coming and I wept in sorrow anticipating the loss of my son – but, with all the sorrow I knew at the time, I at least had the hope of another moment. There was always hope of another something – and that kept the true weight of grief at bay. It wasn't until Mitch was gone that the true weight of grief broke every part of me. All the sorrow I knew before, anticipating his death, was but a foretaste of a much deeper pain to come. That was when my heart was hurled into oblivion.
I have learned the true hell of losing a child happens in the aftermath, long after flowers and casseroles – that is when it’s hardest. And it is hard for a long, long time. It isn't hard for want of sympathy, it is hard because he is gone. Really gone. Days seem to stretch eternal and night, with its promise of sleep, is a welcomed escape from oblivion and the heaviness of grief.
For the next year and a half I found myself slipping in and out of oblivion. The first 12 months were absolute oblivion – there were more moments of tears than no tears. Thankfully that is not the case today. I still cry every day, but I no longer cry all day.
I find myself slipping into oblivion at the most unexpected times. Although oblivion is no longer home to my broken heart, it is a second home and my heart will take residence there without any warning at all.
In fact, just yesterday I was in a business meeting discussing many important topics related to our future as a business. At one point, without warning or provocation, I was taken over by a profound sense of loss. “He’s gone. Mitch is actually gone.” I found myself quietly gasping for air thinking to myself, “I can't believe he’s gone.” It was a wrestle of the soul. I tried to push those feelings aside so I wouldn't erupt in tears in the middle of our meeting in front of the other men. By the time I reached my office and shut my door, the floodgates opened. I wept as though I just lost him.
I don't know how to grieve any more than I know how to watch my child die. I just know how to make macaroni and cheese and play with my kids. I know how to cuddle by the campfire and dream up bedtime stories. I don't know how to live without Mitch – but I don't have a choice in the matter. Each day I take a step forward – and each day is a little better than the day before.
I miss my son – every moment of every day I miss him. I wish I didn't have to go through this. And though I find my heart in oblivion at the most unexpected moments, I'm somehow able to find my way back to that path of healing, that path of peace, and thankfully I haven't lost any ground.
Somewhere on the other side of all this hell, is heaven. I seek after that.
A few weeks ago we received a package in the mail from a Mitchell’s Journey follower who, over the months, has also become a friend of our family. Because Father’s Day was around the corner my wife wanted to wait and open it on that day in honor of our little boy. I am glad we did.
“Sometimes in our sorrows the child in our heart cries out, “Oh Dad, why did you break me?” Then a loving whisper, if we listen, “I’m not breaking you dear child, I’m shaping you.””
As we opened the package we discovered a beautiful stained glass ball about the size of a basketball. Carefully placed in the same shipping box were other small tokens of love from their family to my wife and kids. Little pieces of crumpled purple packing paper, like decorations, were scattered about as if to say they cared enough to remember one of our son’s favorite colors. Everything about their gift was a symbol of love. We were deeply touched.
That evening I asked Natalie to help me take a photo of the gift with the sun setting in the backdrop. I was so drawn to the stained glass ball. It was beautiful and reminded me of something Elisabeth Kubler-Ross wrote, “People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”
I hope to always have a light from within – to never let discouragement and pain darken my heart and dampen the light of faith. For true faith is a candle in the darkness and illuminates sights unseen.
Maybe she was on to something … perhaps our lives aren’t all that different from that of stained glass. Being mortal, we are fragile and break; only, we don’t always get to decide how and where we break. Sometimes that is the craft of the Master Artisan. We can, however, have a hand in how we put ourselves back together again.
Though I would rather be unbroken, with my son still in my arms, I can’t help but sense what is coming together after all my brokenness may be better off than the person I was once becoming. Each day I slowly, carefully, and sometimes painfully put the pieces of my heart back together the best I know how. Though pained and broken, wanting badly for my son, I can see the hand of God and sense the shape of things to come.
Don’t get me wrong; the death of my son has broken my soul. My heart is tender and bleeds … it isn't the same as it once was and I’m not sure it will ever be. What I thought a medley of shattered glass and broken dreams is in reality altogether different than what I think I see. Each piece, though agonizingly broken is colored by the deepest hues of love. A beautiful mosaic forged of pain … a heavenly arrangement from my Father above.
Sometimes in our sorrows the child in our heart cries out, “Oh Dad, why did you break me?” Then a loving whisper, if we listen, “I’m not breaking you dear child, I’m shaping you.”
When night came my wife and I would try to get a little rest in a small corner of the CICU room. On a bench barely made for one, we somehow managed to share it and lay our weary heads together hoping to find energy to fight another day.
This was what I saw each night from my pillow. The florescent lights from outside shone through the glass doors and paper-thin curtains like the punishing noon sun – as if to taunt my fatigue. On top of that, alarms were constantly sounding alerting nurses of the disaster that was unfolding in my son’s body.
Unable to find rest, I would often sit in a chair beside Mitch and hold his tender hand while he slept. Quietly I wept. As I've noted in earlier posts, his heart was pounding so violently it seemed as though a grown man were in his chest trying to punch his way out. I thought to myself, “How could this be? Here is a little boy who has a mind to hurt no one – but is being mortally wounded by an invisible enemy. How could this be?” There are answers – but often, in our sorrows, they are not as forthcoming.
It was hard to find rest at the hospital because everything reminded me of the violent battle that was taking place under the surface of my son’s skin. While doctors were doing all they could to keep death at bay just a little longer, everything reminded me Mitch wasn't on borrowed time, but at the end of time. Each night I would sit by my tender son and weep a little more than the night before. Each night I found myself more weary and very much in need of rest.
Finally, after having exhausted every medical avenue we knew at the time, we were home. No longer smothered by the constant reminders my son was dying … no more alarms, no more displays showing his schizophrenic heart rate … we were home and focusing on the other heart, the one that loved. At least at this moment I understood how ignorance could indeed be bliss. We did exactly as the cardiologist suggested as he choked back his own tears, “Take him home and love him with everything you've got.”
While travelling through the wilderness of grief I have discovered sleep a strange bedfellow. On days the gravity of grief is particularly heavy, sleep is a welcomed break from the sorrows of the world. Sometimes night can’t come fast enough – for I know I will find rest.
Yet there is a place that terrifies me … it is the transition on either side of sleep. Most nights [or mornings] I consider myself lucky if I slip from one state to the other quickly. But if I spend any time at all in that place of transition, somewhere between sleep and consciousness, I experience the horror of losing my son as though it just happened. Those moments are terrifying beyond description. They break my already broken heart, all over again. I wish these moments didn't happen. But they do. And I cry out to my Father, that my weary soul might find rest. I don’t know if those streaks of panic and horror will ever stop. I pray they do.
But if not, I will bear that burden with a glad heart. For I know in my sorrows I am learning; and though my hands tremble and soul shakes, I will take these lessons patiently.
One day I will see my deepest sorrows transformed into the sweetest glee.
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.