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“The last button. It seems in life the hardest thing is always the last thing: the last lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or simply looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different. ”

— Christopher M. Jones | Mitchell's Journey

There are some moments in life that burn an image into your mind with permanent marker – and some experiences so hard to bear, they change the shape of your soul. This was one such moment that broke me and reshaped me in ways I'm still learning to understand. 

My dear wife was dressing Mitch at the funeral home. Our mothers were with us as well as our oldest sisters; each of whom played a precious and sacred role in Mitchell’s life and we wanted them to participate. Also, we were afraid of doing this alone.

Our once-little baby had grown into a beautiful, funny, thoughtful, and caring young boy; yet there he was laying quietly on a table – motionless and frighteningly cold to the touch. My sweet wife, along with these other good women, reverently dressed Mitch in preparation for his funeral - where we would honor the good little boy that he was. Natalie was doing okay until she got to the last button – then grief washed over her like tidal wave, thrashing her about on the inside. This was the last button she would ever fasten for our son – and that broke her heart. It broke mine, too.

I was a wreck that day. In fact, I was a wreck on the inside for many months afterward. Years, in fact. I think I've just begun putting my pieces back together again. Even still, I carry a father’s grief and it is a terrible burden. Yet as much as I hurt on the inside, I know my wife hurts in ways I cannot imagine - for I am a simple man. On the other hand, she carried him, gave birth to him and made sacrifices in ways only a mother can - and with that pain and sacrifice comes a love unique to that service and surrender. So, I consider her grief hallowed ground. I silence my own tears so that I might wipe hers and scoop up her shattered pieces. And when I can, I try to gather mine.

All too often I hear people suggest “there is nothing like a mother's love” – in a manner that seems to subordinate or dismiss the love of a father. In like manner, I hear less often the same of a father’s love as being more than anything else. It's almost as if they claim one love is greater than the other. Nothing could be further, yet at the same time closer, to the truth. They are correct in saying there is nothing like a mother’s love; in the same way there is nothing like a father's love. Both are different, both are beautiful and sacred in their own right. But to suggest one is greater or weightier than another ignores one immutable truth ... they are both parents and hurt deeply for the one they loved and lost. Maddeningly, some people are so focused on comparing grief they forget to simply honor it.

So when I look at this photo, I set aside my own sorrows and I reverence my wife’s. Her sorrow is as unique to her as her relationship was with Mitch. It was beautiful, vast and deep.

The last button. It seems in life the hardest thing is always the last thing: the last lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or simply looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different. 

Neal A. Maxwell, a man I greatly admire, once wrote, “We should certainly count our blessings, but we should also make our blessings count.” I love that statement because it reminds me of the importance of putting our blessings to good use - otherwise we are throwing our gifts away. 

Mitch ranks among the sweetest of the many blessings I have received in this life. I vow every day, when I button my own shirt as I ready for work, to remember the blessing Mitch was in my life. And most importantly, to make that blessing count … to allow this experience to become an agent of change for the better. This image, burned in my mind and heart, reminds me to make Mitchell’s last button count – if not for anyone else, then for myself.

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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

 

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Mitch was home on hospice for a few days and was anxious to play a new video game that had just been released. We wanted him to enjoy what little time he had left, so we paved the way for him to play. The thunder of crashing sounds and music filled the air. Mitch was audibly in awe of the game’s graphics and I could hear him down the hall saying, “Oooooh, that is so cool!” 

Suddenly there was silence.

“Oh … no. Not now. Please, not now.” I cried inside.

Panicked, I ran down the hall with the speed of an Olympian to see if Mitch was okay – after all, his cardiologist said he was at risk of instant death. He was sitting strangely quiet on the couch when I said in a worried tone, “Mitch, are you okay?” 

Mitch smiled softly and whispered, looking toward his hand, “Dad, look.” I then saw baby Marlie who had rested her head softly on his hand and began to sleep. Mitch didn’t move a muscle. 

In this very moment my heart burst with love and gratitude. I loved my son with all of my heart and was grateful he was entrusted to me. I loved this puppy for what she did for my dying boy’s heart and soul. I loved my father-in-law for becoming an instrument of love and mercy – for finding this puppy for my sick child before he passed away. And most of all, I loved my Father for the many tender mercies that were in my life – however undeserving I may have been. 

Though we were hurting deeply, we were also being helped by an influence unseen – and that is no small thing. Yes, Mitchell’s Journey is a story of love for a sick child … but it is also a story of Heavenly love. Somewhere in all my heartbreak, deep in the shadows of sorrow, I have discovered that Heavenly love anew. 

I lost track of the many winter nights when I wept and pled for my son – that somehow Heaven would make things right. Eventually an insight, like a flash of light, broke through; “Be patient, my child, death is not the end, and there is something I want you to learn about you.”

Slowly time passed – and I found myself in agony over moments lost. Days turned into weeks and months turned into years. Over time I have learned to walk again and see far past my tears.

It’s microscopic moments like this, between a baby dog and a sick little Mitch, that change the way I see. Instead of focusing on grief and hardship I’ve learned to appreciate our many, many tender mercies. If we’re not watchful, we could complain about the pain and sorrow all day – blinded by grief, unaware of the blessings and heavenly helps along the way. 

I look for microscopic moments to be grateful, because they all add up. And before I know it, those little blessings fill my empty cup.

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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.”

— Christopher M. Jones | Mitchell's Journey

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.