This afternoon Natalie and I went to Primary Children’s Medical Center to visit another young boy who also has DMD and is struggling with heart failure. I didn't take photos of this family out of respect to their privacy, though I was strongly tempted to document their story. What happened to our sweet Mitch is happening to many, many other young children – and we want only to help them the best we can.
As Natalie and I stood outside the CICU waiting for security to let us in, my tender wife clutched the small gift she brought this boy, closed her eyes and gathered herself – for we were about to enter a place very near to our broken hearts. Just past this door and around the bend was Mitchell’s room where a medical team fought to save our son. Behind this red door was the very place we learned our son had days to live and our lives and hearts would become forever broken.
As the doors opened it felt as if we walked back in time. Part of me anxiously peered into Mitchell’s CICU room in hopes of seeing him – instead, I saw a tender infant in the very room that was home to our little boy. As we greeted the family we were there to see, we spoke with this young man a while. He was listless and tired and struggling. Our hearts went out to this young boy who, like Mitch, only wants to live. Our hearts also went out to his parents who love their son so very much. As we said our goodbyes in the hall our hearts were heavy with sorrow and overflowing with love for them.
As we left the hospital I couldn't help but retrace in my mind our journey home with Mitch – when he left the hospital to die. That was his last trip home and the longest commute of our life.
We don’t shake our fists at God for taking our son … His son, home. Instead, we kneel and thank God we had little Mitch in the first place and that because of him our hearts are filled with more love than ever before.
I believe sorrow can be a teacher, turned gift, if we allow it. There is a divine purpose to suffering and struggle if we listen with our hearts. Yet listening with our hearts can be difficult, especially when they’re trembling in sorrow. But, once we quiet our minds and listen with our soul, we will see our sorrows aren't meant to hurt us – but instead our hearts shape and mold. Though we lost our son and weep in grief, we have learned a deeper kind of empathy than we know how to speak.
I don’t know the future of Mitchell’s Journey, or the journey of our family in the years to come. I only know we want to lift and love others – that is what our sorrows taught us.
In ways we never knew possible … we care
Just a day before Mitch went to the hospital for heart failure, a friend and colleague of mine came by our home to offer Mitch some cheer. He was aware Mitch was in trouble, but none of us had any idea death was scratching at our windows. The next morning we would find death violently gashing at our door while we rushed our son to the hospital.
So on what seemed an ordinary Saturday, this noble man brought his wife and children with him; they didn't stay long … just long enough to let my son know they cared about him. They seemed excited for Mitch because he had his very own puppy. It seemed for a moment their joy was connected to Mitchell’s.
Reflecting on this experience I later wrote in my journal, “Nothing is quite so revealing as the origins of someone’s joy. If a person takes greater delight in the triumphs and happiness of others, more than their own indulgences, you have found a noble soul. This man is a noble soul.” It seemed for a moment, at least to me, this good man and his family found joy in watching Mitchell’s joy … and that moved my soul.
Because this man is modest and humble, he wouldn't want me to mention any of this … let alone something he did for Mitch a few months prior. But the gratitude in my heart cannot stay my tongue; what he and his family did for Mitch was simple but profound. Upon learning our son’s heart was in serious trouble a few months prior, Spencer and his family made Mitch the most intricate and thoughtful collage (about the size of a poster) that included funny sayings and images of Mitchell’s favorite things. It was clearly a labor of love - and such labors are worth more than anything money can buy. When Mitch first saw this hand-made poster he studied it for what seemed an hour. He was so touched that they thought of him. Mitch laughed at the funny things they wrote and he was visibly touched by nice things they said. That simple poster was a gift from the heart and it touched my son’s heart.
Just a few days before Mitch passed away I sat next to my weary son as he lay on his bed lethargic and struggling to breathe. He nudged my arm softly and pointed to the collage that was made with loving hearts and Mitch smiled – as if to acknowledge the kindness extended to him months prior. He didn't forget the love he received back then and it lifted his weary heart at the end.
Once again I was reminded the origins of joy are found in the service of others. Spencer and his beautiful family found joy in lifting and loving – they didn’t seek attention, they just sought to love their neighbor quietly and sincerely. They were my teachers then and they are my teachers again today. For in the quest for joy, simply serve others, there is no better way.
Before my son started to slip into oblivion I wrote in my journal “To have a child with DMD is to cradle a baby made of sand. No matter how hard we try to keep them together, they break apart and slip through our fingers. There is no stopping it.”
I agonized that my son was slipping through my fingers and I couldn't keep him together. In his final days I could scarcely hold a handful of him – there was little of him left and he was blowing away by the winds of change.
As long as I can remember I always wanted to be a father; I loved children and I couldn't wait to have my own. Only when my wife and I started our own family did I begin to understand the depths of love – how deep, wondrous and beautiful the journey of parenting can be. Once I began to hold my babies in my arms, when I learned how to dry their tears and carry their sorrows, to make them giggle and help them take steps into a brave new world … only then did I begin to understand, perhaps only on a primordial level, what our Father feels about us. He is, after all, our Dad.
While I did all that I could to protect my children from harm, I also understood I couldn't always rescue them – that sometimes they needed to work out their own troubles, even if I stood nearby should they needed a helping hand or words of encouragement. Were I to rescue my children from the little troubles they would not learn how to solve problems and soon find themselves in much bigger trouble. A delicate balance parenting is. Natalie and I understood that in our struggle are we made strong – and insulating our children from struggle doesn't help them, it hurts them in the long run. I know our Father understands this better than anyone. He didn't send us here to build cities, riches and other things – He sent us here to build our souls by the sweat of our brow and the toils of our heart. All that is material is simply immaterial, in the end.
So there I sat at my son’s bedside with tears running down my neck – holding my baby made of sand. I, too, was very much a child at heart and looked to my Father for guidance. I knew life was meant to be a struggle of the soul but, being human and a frightened child, I still prayed, even begged, He would somehow rescue my son and family from such a sorrow. But if not, I trusted the wisdom of my Father, and on bended and broken knees I followed Him.
Although I always longed to be a parent, I never knew fatherhood would come to me at such a heavy price. There have been times my sorrows have been so deep that I wished for death, for such would have been a sweet relief. Yet in my sorrows and in my grief, I have learned about our Father and His unspeakable peace. It doesn't always stay and sometimes it’s rather brief … just long enough to let me know my Father is standing nearby, should I need His helping hand and some heavenly relief.
I am grateful for a Father, who is so much wiser than I; who knows when not to rescue and stand quietly nearby. I am grateful for a Tutor of the soul so infinitely wise; who knows it’s in our struggle we learn to see with heaven’s eyes.
As bewildering as this journey has been, I wouldn't trade my time with Mitch for all the peace of mind or riches of men. Though I stumble and often weep, I will bear the burden of grief with gladness … for Mitch was mine to love and to keep.
When I think back on my baby made of sand, I realize at once, such is the fate of man. There will come a day I will see my son again, no longer grains of sand, but a soul immortal and beautiful … masterfully shaped by our Father’s hand.
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.