It’s been said the only bad photo is the one you didn't take. Although this image is out of focus and not properly exposed, I am glad I took it. To me this is a beautiful moment in time I will never get back and I would rather have a blurry image than no image.
It was May 2003 and baby Mitch was a chubby little toddler. Our kids were so young back then; it feels like yesterday, but a lifetime away. I knew something was wrong with my little boy but I couldn't put my finger on it, I just sensed he would have a short life. But I didn't live my life in fear of the future, I lived each moment the best I knew how. I wasn't always good at it, but I always tried.
Natalie wanted to take our kids on a walk to a pond near our old home in Draper, Utah. We fed ducks, chased squirrels and enjoyed the spring air. As we began to walk home I remember getting ahead of Natalie with my oldest son, Ethan. He and I were talking about frogs and snakes and the circle of life. Ethan was a funny little squirt and always had a pocket full of conversation. I can still hear his little voice in my mind. I have so many wonderful memories of Ethan, and all my children. My cup runneth over.
At some point I turned my head to see my sweet wife who held our baby in her arms. Laura-Ashley had a serious look on her face and was clearly talking about something important. Wee Mitch was turning his body away from his mom because he wanted to get down and grab wood chips on the trail. I'm pretty sure baby Mitch thought they were little unwrapped candy bars. While Mitch tried to break free, Natalie lovingly held our baby while she gave our daughter her undivided attention.
I think mothers are awesome. How easy it would have been to say, “It’s been a long day. I stayed up late the night before rocking baby in my arms. I woke up early, changed a pile of diapers throughout the day, fed you, washed and folded your clothes, cleaned the house and fed you again … I’m tired. Go watch TV.” Although my sweet wife could have said all that and so much more, she didn't. Once again she traded inconvenience for love and I honor her for that. I have so much to learn from my wife.
Having children is a heavenly paradox of sorts. It seems the only mortal relationship where we give endlessly to these little people who have no practical means to repay us, at least in the conventional sense … yet we get so much more in return. They consume our time, money, and patience. They make nights short and days long. They break things and leave messes. Not unlike what you might read on a warning label to a new drug, the potential side effects might seem overwhelming and give us pause. Despite everything these little ones take, and the emotional toll they exact, they give back more than we have the capacity to imagine. Ask any parent how much they love their child and they might stumble to find words. Even if they find words, they are woefully inadequate. Were you to ask me how I feel about my children my eyes will simply fill with tears. There are simply no words to describe the love we feel for our children. Therein lies is the heavenly paradox; we love whom we serve. Service is the great multiplier of love.
I hope when the time comes and I am laid to rest that my shoes are found worn out, hanging by threads, and my hands are weathered and calloused from service to my family and fellow man. I hope my knees are found worn and bruised from talking to my own Father and praying for guidance. And, with any luck, a broken heart that is swollen and overflowing with love.
My son’s journey through life and death has changed the trajectory of mine. Though broken and deeply flawed, I am changed. I am on a different path now and as I journey to that place beyond the hills I know there is work to do, service to perform and people to love. Should I ever find myself lacking in love, I will know I’m not serving enough and will double my efforts. For love is the language of heaven, and I want more of that.
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.