This is an unusual video for Mitchell's Journey. Stick with it - because it will take you to an unexpected discovery. In the end, it's about life and family.
This May: Featured Essays on Family
Here is the keynote shared at the 2018 Annual PPMD Conference. It was a blessing to share some ideas on how to find joy in a journey otherwise punctuated by difficulity and discouragement.
I took Wyatt to sports clips today. When we were asked to check in at the kiosk, I saw Mitchell‘s name on the register. This was the same place Mitch used to get his haircut on occasion. He always loved to get the deluxe package where stylists washed his hair and massaged his scalp.
During one of our visits Mitch said softly, “Dad, I really like it when they run their fingernails through my hair. Sometimes I almost go to sleep.” I chuckled and kissed him on the forehead and said, “Me too! Wouldn’t it be nice if someone could do that to us every day?” Mitchell nodded as his eyes turned down as if to think about what I said. After a few moments of thought, he responded, “Yeah, but then it wouldn’t feel so good anymore because I’d get used to it. I like it better when things are rare.”
That sweet exchange and many other memories I had filed in the back of my mind began to wash over me the moment I saw my son’s name on the kiosk. It was an unexpected, painful reminder that my sweet son is no longer with us.
I’ve been happy lately – but I admit, my heart deflated at this moment. And when Wyatt tugged my arm and said, pointing to the kiosk, “Hey dad, look, it’s Mitchell’s name.” I felt a second wave of hollowness in my heart – an echo in the caverns of my soul. Suddenly, I felt a deep longing to have that sweet little boy back in my life.
I can see how reading this blog can be misleading to some who might think I sulk about with my head hung low, constantly picking at my wounds. What they don’t see is 90% of my life is occupied with my wife and children, work and other dreams I’m pursuing. When I sit down to write stories of Mitch, I’m opening the door to the public to my personal therapy sessions – except I’m both the patient and the therapist. Writing is how I grieve and how I heal. It works for me. When I write, I’m creating a grief moment – and those are healthy for those who will hurt for the rest of their lives. What made this encounter with my son’s name so difficult today was its suddenness. There as no warning … no way to prepare. It was a trigger, and because of it, I wept. They were refreshing tears. Healing tears.
While this tender breadcrumb pointing to my son’s absence may have pained my heart, I was grateful for the reminder of my son’s philosophy on things that were rare. Mitchell’s heart was a treasure chest in which he kept the sweetest things. I suppose this journal is a record of the things he kept close to his heart and a missive on the things he’s teaching mine.
Mitch had a maturity of mind and soul that was itself rare. He was careful never to let things he loved be over-used or taken for granted and he always delayed gratification so that the reward was both rare and deeply appreciated. One year, Natalie challenged our children to not eat any candy for a year, and she’d pay them $100. Mitch was the only one who met the challenge. I even offered to make Halloween exempt from that challenge, but he chose to be true to his original promise. On January 1st the following year, Mitch earned a crisp $100 bill. To little Mitch, it wasn’t the money that mattered as much as the accomplishment.
Even more than material things, Mitch treasured moments like none I have known before. I have yet so much to learn from my son. Today I was reminded to treasure things are rare. Specifically, while time is common to all of us –being in the moment is rare. By looking backward and examining my life, I can’t help but appreciate the moments that are yet ahead of me. Because of Mitch, I’m going to take extra care to treasure moments – for they are special. They are rare.
When Mitch was a tiny boy he’d softly say in a childlike tone, “Dad, come wiff me, I show you sumping.” With that, his chubby little hand would grab my fingers and gently tug me toward something he discovered. He was never overbearing but with great love in his heart would gently lead me along. Until his dying day, that softness never left my son – though he probably could have found any number of reasons to be angry with his lot in life. He was kind and pure and overflowing with a faith I scarcely comprehend. I think when my mortal eyes fall away and I see my son for who he truly is, I will see that he was my older brother and that he was here to teach me.
I was always fascinated by the things he found interesting; the way an ice cube melted on the kitchen table, or how bees would land on a flower and not fall off the petal, or the sheer magnificence of a sunset that captured his heart. Little Mitch was easily entreated and marveled at the little things in life. To Mitch his cup was always overflowing and he stopped at nothing to drink it all in.
On this spring day, while taking a walk as a family, my sweet little boy offered that familiar invitation “Dad, come wiff me, I show you sumping.” With a little tuft of grass in his hand he led me to a corner behind a tall tree and said in his tiny voice, struggling to pronounce the letter “L”, “Dad, wets make a fort.” I don’t remember the other things he said … I only remember getting choked up by his tenderness. I wrote in my journal that night, “How great are these little ones. Indeed, of such is the kingdom of heaven.”
When I look at this tender photo of my son I am reminded it isn't what we do together as families that matters as much as how we do it. My most treasured memories with my family aren't the big trips to Disneyland or other attractions, which things were always significant financial investments. Instead, the memories I treasure the most were the emotional investments in my children … it was the tiny adventures just down the street from where we lived; it was the cuddles on the couch, the heart-felt talks about whatever was on their mind, or the wandering conversations on the grass. Those memories are where my heart yearns to go – for they were woven with love. I would rather have one loving conversation with my children than a thousand trips to all the wonders of the world. In every way that matters, our children are the world’s greatest wonders.
Even in his later years, before he passed away, Mitch would often come to me and just as tenderly say, “Dad, come with me, I want to show you something.” I was always anxious to see the world through his eyes.
I can almost hear his whisper now, ever so softly in my mind. Only this time he see’s things that I cannot – for he has traveled down a path far from mortal view. So, I must listen closely now … I must listen with my heart and mind; for gems of the soul are, on purpose, not easy to find.
Sometimes, when I’m listening, I think Mitch still beckons me to see the things my mortal eyes are blind to, yet my spirit seeks eagerly.
I am so thankful for my little son who taught me one the most important lessons on earth and heaven above: whatever you do, do it with love.
Today I visited the University of Utah Clinical Neurosciences Center.
Meet Dr. Butterfield MD, PhD. He is focused on helping children like Mitch, who have DMD and other neuromuscular diseases. I was immediately impressed with his depth, intelligence, and empathy. We covered a lot of ground. We discussed the complexities of science, emerging medicine, clinical operations, and the deeply human dynamics that affect patients and their caregivers. (and all along I thought being an entrepreneur was complex...)
While I’m interested in the science that will save children, I’m equally interested developing tools that can equip families and individuals to better cope with the inevitable holocaust of life’s hardships, whether from DMD or other life traumas. I not only want to prolong and improve the quality of life, I want to help people make the most of the life they have.
I’m excited to get to know this doctor and his clinic better over the coming months and years. I’m also excited to serve on the board of #PPMD and help where I can. I have deep admiration for Pat Furlong and her staff.
As I sort out my place in the universe, and what life looks like in a world without my son, I’m discovering ways #mitchellsjourney might contribute to the larger narratives of science, humanity and family relationships that are unique and deeply human.
I remember how playful my children were at this moment and how much they loved their mother. We were at a reunion and every family was back in their hotel rooms to rest a little. As a Dad, my heart swelled when I saw our kids laugh and kiss Natalie’s cheeks to let her know how much they loved her. This was an emotional payday for my sweet wife and best friend – and my soul smiled, glad to see her cash in a little on all the long nights and thankless days. I was glad to capture this sweet exchange because this was one of those perfect moments that can slip through your fingers like the finest sand. On the darker days, these good times remind me that not all of life is bad.
As far as I can tell, I believe one of the hard truths about life is this: things don’t always turn out well. And sometimes, things can go terribly, horribly wrong. Bad things can, and probably will happen to us. If we live long enough, our hearts may be broken many times and we might suffer a great deal over the years. But between all those hurts we’re going to experience many, many happy times.
I still miss my little boy and I’m still grieving – but I think I’m entering a new stage of grief – that is the stage of deep acceptance. When I think of the stages of grief, I don’t think I ever experienced anger – only great sadness. Maybe I did experience anger … but I don’t ever remember being mad at God – only very, very sad. I could have filled an ocean with my tears.
On my grief journey, I often wondered what acceptance would mean to me. I think I’m beginning to understand. At least for me, I’ve learned to accept I will forever miss little Mitch. I accept there will always be an empty chair at the table of my heart – and I’ll long to see it occupied. I accept that I now live with chronic [emotional] pain. Yet, pain, like every emotion, has its time and place. The emptiness is always, but the pain comes and goes – as does joy and peace. As time progresses, the peaks and valleys are less intense.
I think about Mitch daily – sometimes I cry, other times I smile, and increasingly, I giggle over the cute things he used to do.
I’m beginning to discover something about what can happen to the wounds that cut us so deeply. Somehow, some way, if we’re patient, and if we seek to find meaning before we seek peace … we’ll heal faster and hurt a little less. To my great surprise, these terrible wounds are turning into soft, peaceful memories – and fewer tears fill my eyes.