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 think that nightmare scenario crosses every parent’s mind at one point or another and we ask ourselves: “What would I do if I lost my child?” In every way that matters, we are asking ourselves what would happen if we lost part of ourselves – for that is what our children are to us. That’s what our children will never understand until they have children of their own: they become more important to us than we are to ourselves.
Just after we were told Mitch had days to live, Natalie’s mother and father came rushing to the hospital to offer love and support. Over the next few weeks, my wife and I would keep the knowledge of our son’s impending death from Mitch. Peace of mind and childhood was our gift to our son – at least for a little while. You see, we didn’t know if he was going to die in an hour, or a day, or in a month and we wanted to help Mitch make the most of what time remained.
“I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.”
Palliative care workers circled our room and visited daily asking for permission to talk to Mitch about his death. Each time we told them no. Knowing our time with Mitch was short weighed heavy on our souls. We hid our broken hearts behind a soft smile and we put away our dashed hopes and shattered dreams under a blanket of hugs and loves. Though we didn’t know how to protect him from death, we could protect him from worry and fear. And that is what we tried to do. That was all we knew to do.
When these good parents arrived, Natalie and her father found an empty room in the cardiac intensive care unit. A curtain was drawn and a tender conversation between a daddy and his little girl ensued. Tears of deep grief and anguish fell to the earth. I wonder if the heavens wept just a little that day – not out of sorrow, but empathy. I don’t know what they talked about. I only know that empty room became hallowed ground between a good father and his little daughter.
I stayed with Mitch and his grandmother in his CICU room. My mother-in-law is as good a woman as there ever was. Her heart was broken for Mitch and her daughter and our family. I’ll write of her another day.
After some time had passed Mitch asked me to get Natalie. When I went to get her I stumbled into a most tender and beautiful scene. I saw a good father embrace his daughter as she wept. In her trembling hand was a pamphlet about how to talk to your child about death and dying. That impossible scenario we couldn’t imagine living suddenly became a harsh reality.
When I saw my wife and her good father I sensed something similar between our Father. I thought of those times I knelt by my bed with bruised knees pleading for a way out for my son; the nights seemed to stretch out into infinity as I wet my pillow with tears. I felt the words in my heart, “I cannot take your troubles from you, but I will walk with you and lift you when you fall.”
Somewhere out there lives my son. And when I see him next I will drop everything and I will run … boy, will I ever run. The heavens will weep once more – but this time out of joy – for a family will be reunited with their young, fallen boy.
When I think of my own children, two of whom are teenagers and my youngest now ten, I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.
An impromptu family photo when our kids were little. It's an imperfect photo, which is a perfect representation of our family.
I thought to myself that day, "Were I to die this instant, my life would be complete." Those were the words of a young parent who simply didn't know ... for the longer I live, the more love grows.
What would it take for my life to be complete? It's hard to know when there seems an infinite trail of love and beauty right before my feet.
instagram.com/mitchells_journey
On the corner of my wife’s dresser is a worn-out eraser that Mitch carried with him the year he passed away. His name carefully inscribed by his school teacher – a good woman who cared for her students and grew to love little Mitch. Next to the eraser is a framed photo of my son – which frame was given to my wife as a gift by a compassionate soul. And next to that, a little statue of a boy holding a golden heart. As a very young boy Mitch thought gold was pretty special, so this little statue has become deeply symbolic on many levels.
In the frame is a photo from one of my favorite memories with Mitch. It was a warm summer day and we had taken our kids to the park. Mitchell’s hair was long and floppy and twirled as he rolled down a grassy hill. When I see that image my heart swells with love and my eyes fill with gratitude. This little boy was mine to love and raise. And in a strange way, he kind of raised me. However much losing him hurts, having him in my life was worth every tear … every drop of agony.
Love and grief are identical in at least one respect. I remember when I first had a child, I would tell my still-single male friends how amazing it was … the love that I felt. I would sit on the edge of my seat and passionately try to describe fatherhood … the love that I felt, how my heart had multiplied and soul enlarged. My friends would step back and give me a strange look from the corner of their eye and say something like, “Okay, now you’re being weird.” Suddenly I remembered my life before children and thinking the same thing.
I came to realize that it is impossible understand the depth of parental love until you become a parent. I cannot transfer, describe or in any way, share that kind of love; it is knowledge that comes only from experience. In like manner, one cannot know the hellish depths of parental grief until one has lost a child. There exist no arrangement of words or song that can cause someone to understand. It, too, must be experienced. That is how love and grief are identical. Both are spiritually seismic events that change the landscape of our souls forever.
Both must be experienced: love and grief. Then and only then do we begin to understand the true value of peace. Each in order and in their special way: love first binds us, grief then grinds us, and peace eventually makes right and refines us. They must be experienced. There is no other way.