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.