Several months before Mitch passed away a friend and colleague handed me a metal coin he created for one of his businesses. On the face of it was etched a butterfly and the word transformations. He gave it to his clients as a token and reminder of what we are meant to become, something far greater than we currently are. This good man, who has faced incredible difficulties of his own, learned to channel his own disappointment and sorrow into love and the service of others. I admire him greatly.
On this afternoon we took Mitch and the kids to the mountains where we would take our second-to-last family photo. Had I known what little time was left, I would have asked Natalie if we could take turns driving so we could each cuddle with our son.
We found ourselves at our destination surrounded by a forest whose colors, save a few patches, were nearly gone. Mitch and the kids scooted down old wood trail across the marshland. I reached into my pocket and discovered the coin my friend gave me, which I mistakenly thought I left on my office desk. As I held it I couldn't help but take a photo of it and contemplate the process of transformation. Soon, I would find myself wrapped in a cocoon of grief, wondering if all was lost and if life would ever be worth living again. Such is the sorrow of losing a child.
I really don’t know much about grief, but I’m learning a little each day, and each day I experience a little more of a transformation. I used to write of my journey THROUGH grief, as though somewhere a great way off, there would be an end to it. Any more, I write of my journey WITH grief. For as far as I can tell, grief will be my companion so long as I live on this earth. Such, also, is the sorrow of losing a child.
There was no way of knowing what would happen when I started Mitchell’s Journey. Like a camping tent, I set it up with the intent to eventually take it down. I don’t think I can do that now. Mitchell’s Journey has transformed into something I’m still trying to understand.
I will still write of hard things because hard things happened. I will share hard stories because I don’t want anyone to ever confuse DMD as an inconvenient journey. Duchenne Muscular Dystrophy is a fatal journey. 100% catastrophically fatal. Not one can escape it.
I recognize, also, the exhausting toll such stories can take. So, I am also going to write of the transformation I’m experiencing and the hope and happiness I feel in my heart. Today I feel as much joy in my heart as I do sorrow, which thing I never imagined nor ever quite supposed. The journey of grief has taken me places I never had a mind to go.
To those who are stumbling deep in the wilderness of grief, I want you to know there is eventually peace. It will never stay, not like it did before, but you will appreciate it when peace comes to you more and more. The road is long and skies sometimes dark and bleak, trust me when I tell you … somewhere out there, on your own journey, is happiness and peace. Just keep moving forward at your own steady pace and remember the journey of grief is not a race.
One day, perhaps at our journey’s end, we will look back on our broken paths and marvel at where we've been. I wonder if the parts of us we thought were so broken will be the very thing that transforms us like the promise of this token.
With a bang the race started. Mitch sprinted ahead of the other kids and quickly realized how weak his muscles really were. He was young and still learning about the limitations of DMD, which were always changing and always getting worse. He looked normal – and heaven knows how badly Mitch wanted to be normal and healthy – but he didn't understand until this moment how quickly his muscles would tire.
Within a few short yards Mitch could feel the punishing effects of muscle fatigue and with each lunge forward he became weaker - he knew he wouldn't make it. Suddenly his face was overcome with grief and worry: grief because he wasn't as strong as he wanted to be and worry that he would fall and hurt himself. I'll never forget the look on my son’s face as he crossed the track lines and ran to the safe harbor of my arms.
I immediately dropped my camera to the floor and ran to my son and gave him the biggest hug between a father and son in recorded history. I then kissed his tear stained face and said, “Oh, Mitch … I love you.” I wanted him to know that my love for him was absolute and unconditional and that his mom and dad were proud of him no matter what. I took hold of Mitchell’s face that was trained on the ground and looked him in the eye and said, “Son, every time you do your best, you win.” I also told him he didn't need to run races on his feet and that was why we brought his scooter. I reminded Mitch why some people use reading glasses – to help them do what their bodies cannot – and there is nothing wrong with that. Mitch used his scooter the remainder of the event - and that made all the difference for him. The rest of the day was filled with smiles and happiness.
We were attending a Sports Day for kids with disabilities, hosted by the Jordan School District. As we participated in the remaining events we saw children with virtually every disability you could imagine. My heart went out to every child I saw. I also realized there were parents there who loved their children just as much as my wife and I loved our son – and there were probably children who, like Mitch, were a little unsure of themselves and wanted to do more than their bodies allowed. I wanted to hug every child I saw and look them in the eye and tell them how much they mattered. I wished then, as I do now, I had the power to heal broken bodies.
After this tender moment with Mitch, my sweet son who tried his best to be like the rest, I began to see the world and my life with greater clarity. I realized anew, when it comes to raising children, their efforts are more important than their outcomes. What’s more, our response to their efforts shapes them profoundly. I don’t expect my children who with untrained hands and barely able to hold a crayon to draw a masterpiece. To the contrary, their heart-felt scribbles are greater than any piece that hangs in a museum hall.
This moment on the track, one warm Saturday morning, I was reminded the depth and breadth of my own happiness are inextricably connected to the well-being of my children. When they are happy and well, I know no greater joy; and when they hurt or suffer, I know no greater sorrow. I was reminded that being a father I am no longer me – for I am the sum total of my family. I am we.
Thus the safe harbor a family should be.
Every time Mitch went to Shriners Hospital he would be taken to a large closet filled with unopened toys and invited to take one home. Each toy was donated to the hospital by generous people and sponsors. The hospital wanted to give kids hope that good can happen to them despite whatever burdens they carried; an enlightened philosophy that hope is medicine, too.
On one occasion the doctor was running late so Mitch was allowed to choose his gift before his checkup. Mitch was so excited to have a toy set that included a bio-mechanical saber tooth tiger that shot plasma lasers from a mountable cannon, an amphibious airplane, two cool army guys and a pylon with a penguin on top. Mitch loved penguins so that was an added bonus. As toy sets go, this was the mother lode for Mitch – and that made my heart smile.
With very few exceptions, I took time off work to be with my wife and Mitch for these hospital visits. I love them both so dearly and I never wanted either of them to feel alone. I knew that with each visit things would be getting worse and I wanted them know where my priorities were … with them.
Mitch quickly opened his gift and wanted to play with me. I sat on the other side of the examination table and we started to have battles. Suddenly the examination table sheet became a frozen snowscape and the blue cushion, icy water. Little Mitch had me be “the guy” as he lunged his saber-tooth tiger toward me. I let him gobble me up and he giggled while I writhed in pretend pain. I had so much fun playing with my son. While I might work to make a living, these are the kind of paydays I live for.
It wouldn't be many years later that I sat on the floor by Mitchell’s bed when he was home and dying. He only had a few days of life left – but we didn't know it. As we sat on the floor, Mitch opened a long, skinny drawer under his bed that was filled with Legos and brushed his hand softly through the disassembled parts pointing out his favorite pieces. He was so weak and so tired; he leaned against me to keep upright and his breaths were shallow. He wanted to play with me but he had no energy. My heart broke for my little son who wanted to live … I mean truly live. I put my arm around him and kissed his head and then suddenly Mitch said, “I love playing with you, Dad.” Tears poured from my eyes. They pour again today.
I’m just an ordinary dad who makes a million-and-one mistakes. I wish life had do-overs, for there are many things I would do differently and better. But I never stopped trying – and for that I have a certain peace of mind.
Although I have made a million and more mistakes, sometimes I get things right. And on this day, at the hospital, and again on the floor by my son’s bed, I got it right; and those are moments of such profound value they are without price.
Last October, just after I wrote the essay NIGHTFALL I sat at my computer and began to chart some of the more significant tender mercies we have received along Mitchell’s Journey. As I began to read my journals, meditate, and prayerfully reflect on my life my eyes were opened and I began to see like never before. What’s more, realized Mitchell’s Journey started long before he was even born. In fact, 30 years prior to his birth things were put in motion that would directly prepare me for this hardship.
Were you to download this image and zoom in you would more easily see the constellations of tender mercies. The lines between the stars are purposeful and illustrate the interrelationship between them and it is largely chronological, from left to right. The color of the stars is also purposeful and has special meaning.
I have removed the labels for each star and will not share the details of these tender mercies because they are sacred and for me alone to know. I can say that each one of these events is absolutely real. It was only upon stepping back, allowing my spiritual eyes to adjust and to see the larger picture that I began to discern the majesty of God and all that He has done for my son and family.
I have now printed this chart on a large glossy plot and it now hangs in my home office as a reminder that if God was in the details of my life then, He is surely in the details of my life today.
So where to go from here? I don’t know. All I know is the sun will rise tomorrow, my son will still be gone and my heart will still be heavy with grief. I also know, no matter how dark, difficult and lonely this journey may have felt at times, I have never been alone.
I used to stand at the edge of an abyss with its mouth yawned, inching to devour my son. I now sit on the shore of a vast ocean peering into its infinite horizon. It is night, clouds lay low and are sparsely scattered and the heavens are clear to see. There is no storm in my heart this day and I can feel a gentle breeze, as if a whisper that all is well. As I look upward I can see these heavenly constellations that tell me I have never been alone. I must cross the waters now – and that is a journey, too.
Over the last few weeks I have felt a certain peace come into my life. It is unlike anything I've ever felt. Surely there have been tears and moments of profound sorrow, but there is an ebbing tide of light that is washing over me and filling my soul. I don’t entirely understand it, but I am grateful just the same … for that is another tender mercy, an evidence of God’s love.
With each day I am learning to adjust to life without my son. It isn't easy – but it is happening. I also have a lovely wife and 3 remaining children who will continue to receive the same love I have always offered them, and Mitch. That is not lost on me and I find great joy in them every single day.
There will be difficult days ahead, no doubt, and I will write of them. But I will also write of our happy times and discoveries we made along Mitchell’s Journey – way back when to now.