When Mitch was tiny, he would sit in the back of a trailer attached to a 4-wheeler while his uncle drove short distances at a quick speed. Mitchell’s chubby little fingers gripped tightly the side of the trailer as he screamed and laughed like a baby pirate in pursuit of childhood treasures. Laura-Ashley and Ethan sat beside him and giggled at how fearless their little brother seemed.
Afterward, I would show Mitch the photos I took and he would say, “Dat made my tummy gig-go.” I would burst out in love-filled laughter, then hug and kiss his cheek. To this day, I can almost feel his little arms around my neck as I hugged him.
As he grew older, Mitch loved rollercoasters. He was fearless and enjoyed the rush and thrill of any ride – no matter how big and scary it may have seemed to an adult. During his last few years, I would have to reach over and hold his head steady on rollercoasters because his neck muscles were getting weaker. Sometimes while Mitch was laughing on a ride I would find myself crying; the combination of tears and the rushing wind blinded me from seeing my son’s smile. I cried because I knew everything my son enjoyed was coming to an end; not through death per se, but because DMD was destroying his muscles and I knew there would come a time he wouldn’t have the strength to lift his head from a pillow. A bitter irony for a little boy who drank life in by the goblet and spared no opportunity for adventure.
When I look back at this time with tiny Mitch, and the million-and-one other times just like this, my heart overflows with gratitude. Yes, heartache happened, but so did indescribable joy and fulfillment. Hurt is the eventual price we pay for love – whether we love a parent, sibling, child or pet … one day, we will lose all of them to time, circumstance and death. But that hurt is a small price to pay for a shot at love. I wouldn’t trade all the hollow pleasures and treasures of earth for this kind of love. It simply doesn’t compare.
This little boy happened … and with him came a hurt I never imagined, not even in my darkest nightmares. But so also came a love and joy I never supposed, not even in my most heavenly dreams.
This happened, the good and bad, and I am better for it. I thank my Father every single day on bended knee; for I know love and sorrow, and now I see.
I am posting a few other photos from this series on Instagram:
instagram.com/mitchells_journey
I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”
I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries.
When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.
Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.
There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013)
In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot.
This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me.
In time, I will see.
A conversation between mother and son… "What is the one thing in life that has most surprised you?" She said, "The brevity of it." #mitchellsjourney#essaysonhope
I remember sitting under the stale, moldy wood of an abandoned tree fort deep in the back-woods of Minnesota. It stood high in the trees like an ancient ruin – covered in summer moss and swaying softly in the breeze. I was a young boy, about Mitchell’s age, and finding such an unexpected fort was magical. It became a place for us to disappear from the world … to dream of things and imagine the future. One summer, while sitting in our fortress in the trees, my friend and I asked each other what we would do if we only had a day to live. That was the first time I can remember asking myself that question. Being young and easily entreated we would talk of shopping sprees, all-you-can-eat candy, and driving Ferrari's.
Even in college I remember stumbling across that same question with friends. Our answers were different then – but the question remained.
Fast-forward about 20 years and this reality barged its way into my life like a terrifying home invasion. As far as we were concerned Mitch was home for a day and might die at any moment. So we lived each day as though it were our last because we couldn't afford not to.
For 28 beautiful but agonizing days, we thought Mitch was only home for a day.
My daughter took this photo shortly after Mitch came home. Moments prior he had reached out to hold my hand, our fingers interlocking and asked in an almost-whisper, “Dad, will you sit by me?” I remember him snuggling his face up to mine. I can still feel the warmth of his skin on my face, his shallow breaths on my chin, and his love bursting in my heart. Sometimes, when I think back on this moment, I reach to my face as though I could touch his – but then the dream ends and he is gone.
I’ll always remember how he snuggled up to me; I just closed my eyes and wished that I could freeze time or that I could steady his failing heart. At that moment I didn't know that Mitch was smiling – I only knew we loved each other. And that was enough, and more.
Home for a day: it was a wonderful blessing and a terrible burden. This experience was (and is) so difficult to endure. Eleven years ago my tender son didn't exist, and I was quite content without him. But now that I've had him I cannot imagine a life without him; and here I must find a way. I pray to God that my heart finds a way.
Mitchell taught me to appreciate each moment as though it were my last. I don’t mean to sound so dramatic as to peer dimly through the window of a funeral home, living each moment in fear of death. What I have come to understand, with exacting clarity and regardless of circumstance, is moments are fleeting. The moments I had with my kids last weekend are long since passed – I don’t get to go back there.
So whether I face death or more life, each moment is my last.
All too often I hear about the perils of distracted driving – but I wonder how often we think about distracted living. Perhaps being distracted is the root cause of much of our troubles.
Mitchell, being home for a day, taught me to remove the distractions that would seem to take life away from my life. And when I removed the distractions and lived in the moment, rich were the blessings and treasured the memories.
A strange illusion, indeed, to think that breathing is living.