I purchased this coin at the gift shop at Primary Children’s Hospital.
It was only a few days earlier we were told our son would die and likely only had a few days to live. Shocked and bewildered, my wife and I began to navigate a sea of trouble and grief for which we were scarcely prepared. Hell came barging into our lives and spared no one.
Each night I sat at Mitchell’s hospital bed and watched various monitors tethered to his body display the chaos that was unfolding beneath his skin. This catastrophe of hurricane proportions was so great, and in the doctor’s minds unstoppable, they turned off the audio alarms because they wouldn't stop beeping. I have seen many scary things in my life and none were as scary as what I saw on those screens. I watched my son’s chest pound as though a grown man were inside his body punching his way out. His tender heart was struggling so hard to support his little body. By this time my son had also lost a great deal of weight and he looked sickly. My young son and soul mate, my baby made of sand, was slipping away and no medical intervention could save him from DMD. If ever I found myself in a time of trouble, there was none so great as this.
One night, at about 3AM, unable to find rest, I sat by my son and posted “Mourning with Those that Mourn” thanking those who were following our son and offering him words of love and encouragement. I was reminded that no matter how impossible some challenges seem, there is always something to be grateful for. And in that moment I was grateful for many of you who took time to love a stranger. If ever there were a testament to the goodness of humanity, it is seen in your goodness to my son. Thank you … from the depths of my soul, I thank you.
In that post I wrote: “While navigating the labyrinth of pain and sorrow, Natalie and I often talk about finding joy, and we believe it is all around us. I think joy is a natural byproduct of gratitude. It's so often the little things, if appreciated, that bring joy to life and amplify happiness. There is so much to be grateful for. There are tender mercies all around us, every day.”
In times of trouble, gratitude is a lifeline; in times of joy, it is an amplifier. If I believed that then, I believe it even more today. In fact, I don’t just believe it, I know it.
I have also found gratitude an effective means of rising above that which would take us down. It doesn't prevent sorrow but it gives context to pain and suffering and keeps us from getting so dizzy in grief we forget there is still something to be grateful for. If our soul is to be likened to soil, gratitude is the great fertilizer. It lets light in, it nourishes and softens our hearts so other things may grow. I have never known a bitter man who was grateful, nor a grateful man who was bitter. Gratitude is divine. Gratitude is a gift from God.
It is to this end I will always pray … to be blessed with the gift of gratitude every single day. And if I am blind to the gifts my Father so generously gives me, I pray for eyes to see. For gratitude can fill our hearts even when our arms are empty.
I’ll never forget this moment. A million years will pass, cities will fall and be swallowed up by the sea, and this moment in time will forever be with me.
The sun was just about to set, the temperature was absolutely perfect and my sweet wife wanted to take our kids to the park so they could enjoy the fresh air – free from the tyranny of frost and snow we had known prior winter months. Natalie, sensing Mitch needed some extra help, lovingly carried our son to the top of the jungle gym and went down a slide with him. She didn't know at the time Mitch had a fatal disease; she just sensed he was special and gave him extra love and care.
Little Mitch had the cutest voice and giggled as they slid down the slide. I loved seeing his tiny dimpled fingers grasp his mother’s hands. I could tell he felt comforted in Natalie’s arms. I remember getting a little emotional as I took this photo and thought to myself, “It doesn't get any better than this.” Though we were a young family and broke, sometimes wondering how we would pay for diapers, I was the richest man in Babylon.
It is unrehearsed moments like this, moments of spontaneous love and goodness, that make my heart swell with love and gratitude.
Just a few weeks after I took this photo we would learn Mitch had Duchenne Muscular Dystrophy and everything in our world would turn upside down. Grief and sorrow would become our tender tutor – and over many years, even to this day, we would need to learn how to make peace with hurt.
It wasn't long after this photo I would find myself many late nights weeping at our kitchen table reading what few books were written about our son’s muscle wasting disease. I was desperate to find a way to save my little baby because I loved him so. I also knew my sweet wife, a broken-hearted mommy, wanted to protect our son – and the “fix it” father in me was deeply troubled that I powerless to fix this.
Though I couldn't stop my son’s body from deteriorating, I knew I had power over some things. I understood I had power over my time and how I chose to invest it. I had power to be in the moment and show love to my family in both word and deed. I had the power to learn rather than languish. To become better, not bitter. I only wish I had power to not hurt so much. I still haven’t figured that out. Perhaps, because to hurt is to be human, I will just need to learn to live with this kind of hurt. As long as I love my son, I will hurt for him.
But, if there is one thing my son has taught me it is: we may not be able to control certain events in our lives, but we can control how we respond to those events and what meaning they have for us.
I am still sorting things out and trying to find meaning in all that is happening. I suppose that is why I write here, to sort out my sorrows and find meaning in suffering. It is so hard. Sometimes grief comes barging into my heart like a ruthless home invasion. It comes unannounced and I confront it unrehearsed and unprepared. One moment I’m fine and the next moment grief, my fierce goliath, tackles my heart to the ground and I find myself wrestling with intense feelings of panic … that somehow I can still save my son from harm. Then I am smothered with feelings that I failed my son and couldn't save him. Then deep sorrow that he is gone. I am learning to endure and manage those, and many other, awful moments of grief; but they are real and they take my breath from me and break my tender heart just a little more. I have come to learn healing hurts.
Yet, despite my sorrows, which are great, I think back on these unrehearsed moments of love and my heart heals a little, too. I think to myself, “I had that! A loving wife and a precious son; indeed, I’m the lucky one.”
Then suddenly, to my great relief, I hurt a little less and I feel a little peace.
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.
Natalie and I sat beside Mitch last year and reminisced about our sweet son. It is rare we take selfies together (or alone) but this moment was an exception because we wanted to remember the moment.
As I took this photo my sweet wife turned and kissed my cheek. I was so touched by her spontaneous love and affection. I thought to myself, “How could I be so lucky?” Then I couldn't help but think how Mitch and my other children have been blessed, comforted and shaped by my wife’s goodness. If she could make me, an adult, feel good inside … I can only imagine what she does for our children.
So we sat on the grass and laughed at the funny things Mitchie did; our hearts swelled at the sweet things he said and we cried because we yearned to have our son back. Though our hearts were heavy with grief, they were also overflowing with love.
Among the many things my son taught me, one of them was gratitude. Mitch had many opportunities to complain how unfair life was for him; but he chose to see the good.
Mitch often said, “I’m the lucky one.” And though the death of my son has broken my heart into a million-pieces-and-one … I want to say to him, “No, my son. You were my child. I’m the lucky one.”