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.
We have been asked to speak about Mitchell’s Journey to many different audiences over the past while and we are grateful for any opportunity to put a face to DMD and share our son’s story.
Soon we will post two videos of recent addresses: one that focuses on our family’s experience from a medical perspective and another about the spiritual journey through our own wilderness. And what a wilderness it has been.
We are grateful to all of you who support Mitchell’s Journey in so many ways. We have some things in development that we will soon share publicly … things we hope will bless everyone’s life, regardless of their circumstances.
In the meantime, thank you. Whether you comment or just quietly observe. We are grateful.
The day before Mitchell was discharged from the hospital, his neurologist came to say goodbye to him. She was the doctor who diagnosed him when he was 3 and monitored his muscular dystrophy growing up. She heard our little boy was suffering end-stage heart failure and she knew this would be the last time she would ever see him.
While the practice of medicine can get caught up in chemistry, physiology and biology, this image shows the nobility of compassionate medicine.
Visiting little Mitch was not easy for her. A few years prior her daughter had passed away and the rawness of her loss was still tender and returning to the CICU brought back painful memories. Yet she loved Mitchell more than her personal comfort and came to visit him anyway. She knew that a little boy was drowning in a sea of trouble, a sea whose undertow would pull him into the depths and darkness of beyond; and she reached out to him … to steady his worried mind and let him know she loved him.
I don’t know what crossed her mind as she drove home that day. Perhaps she cried like I cried. Probably not. But, I suspect her heart was heavy with sorrow by the loss of her own daughter and witnessing the imminent death of a little boy she had grown to love and care for. I do know the look on Mitchell’s face after she left told me he took great comfort that his doctor took the time to see him and offer the best medicine in time and eternity: love.
It has been almost 5 months since I lost my sweet son and time hasn't made things any easier. One thing I've learned on this painful journey is healing hurts. A lot. Not a day passes that I am not overwhelmed with the heaviest of grief and sorrow for having lost him. My daily commute to and from work is often accompanied by many, many tears. The deepest parts of my soul yearn to talk to him, to have his companionship, to hear his sweet voice and see his smiling face, and to let him know how much I love him. I never knew it was possible to weep so much, for so long. The wellspring of tears and sorrow seem to have an endless, generous reserve. Time grinds painfully by like sandpaper on an open wound. What I wouldn't do to have one more day with my son. There are times the ninth level of Dante's Inferno would seem a walk in the park.
And while my soul writhes from a pain I can barely endure, the wound from having lost my boy would seem to be healing other aspects of me, broken parts of me. I’m starting to learn that pain has the capacity to heal – another heavenly paradox, if we’ll allow it.
I wish I had the healer’s art; that I could have fixed his body. Yet, in all my efforts to save my son, I have begun to see that he’s the one who is saving me.