My wife and I spoke to the student body of Riverton High School (in Utah) who has chosen Mitchell’s Journey as the charity they’re going to support this December. Natalie, who doesn’t enjoy public speaking, bravely shared her heart-felt gratitude to these remarkable students for the good they’re about to do. I admire this woman more than she knows. She is stronger than I am. Braver than I could hope to be. Every single day, she makes me a better me.
Speaking to this group of students was humbling. There were two assemblies back-to-back: each time the auditorium was filled to capacity with students anxious to support a good cause. There was a spirit of goodness in that High School; one I will not soon forget. I remember what it was like to be in high school – and I don’t remember anything like what I witnessed. This is a new generation of youth anxious to be about a cause bigger than themselves. They are noble, hungry to help, and filled with compassion.
For the next 18 days these students will sacrifice their time and energy during the holiday season to hold a variety of fundraising activities aimed at helping Mitchell’s Journey. Their student body president, Hannah Kartchner, reminded the students “Remember, it’s not about the money, it’s about the change.” At least to me, her words carried deep and profound meaning. She reminded me of the principle that it isn’t enough to go through the motions, but rather to let those motions go through us and change us from the inside out. This high school is enlightened because they know in the very act of giving they receive. They know that when they give from the heart, their hearts change for the better.
When it was my turn to speak, I felt as though I were already among friends … kindred souls who just want to help. I shared with the students what Duchenne Muscular Dystrophy does to children and its catastrophic outcomes; I then outlined how we plan to support PPMD, MDA and some local families with the money we raise. Finally, I shifted attention to the story of my little boy’s life and death. There were times it was hard to keep my composure. I miss Mitch and sometimes it is difficult to talk about him without getting emotional. He wanted so much to live … yet here I am, very much alive and hurting to have him back in my arms. I vowed the day I lost him, and I vow again today, to make his life and loss matter. I promised my fallen son to not waste another day of my life. Instead I promised to offer my heart and meager talents in the service of others.
Mitchell’s Journey is not only about reflections on the past, it’s about the future, too. To take grief and sorrow and see what good it can do. I don’t know much, but this thing I know: when we enlist serve others our hearts will change and they will surely grow.
Laura-Ashley had taken Mitch on a stroll down the hall while we spoke with the transplant team. By the time this photo was taken, we had already been told the devastating news – Mitch would be denied a heart. I remember this moment well. I sat across from Mitch and listened to his sweet voice talk about a video game he wanted to play. I struggled concentrating on his words; for while my son was focused on youthful things, I was weighed down by mortal things. The prospect of certain death weighed heavy on my shoulders.
Later that night I posted this video about our experience: vimeo.com/54167124
I entitled that video “No Exit” because for my son, there appeared no exit … no way to escape the catastrophic muscle wasting of Duchenne Muscular Dystrophy. No way to escape death. While our son’s cardiologist presented transplant as an explorable option, I realized quickly the decision had been made long before we arrived. So, I was confused why we were there in the first place.
I tried to hide my anguish from my son and hid my sorrows behind a fading smile. I kept it together – but Mitch knew me and sensed something was wrong. Later that day, Mitch asked me, “Dad, what are you thinking?” I said, “Son, I’m just thinking about the value of time and how much I treasure every minute I spend with you.” Mitch smiled and said, “I like spending time with you, too, Dad.” With that, he turned and skipped down the hall in his funny way. I turned my head and wept.
A few months later, I would see this same transplant team walking about the cardiac intensive care unit rushing to the aid of other children who qualified for a transplant, while my little son lay in the same unit sentenced to death. Imagine the heartache, confusion and desperation we felt – then magnify those feelings a million-fold. That, then, will represent only a grain of our sorrow.
I asked attending doctors about an LVAD and they uniformly told me that wasn’t an option. It wasn’t until Mitch was home on hospice we heard from Pat Furlong at Parent Project Muscular Dystrophy who offered to help get Mitch an LVAD. For reasons I will detail in future posts, and in greater detail in a book, the promise of hope was dashed by a series of heartbreaking realities. The hardest reality of all, there was no exit.
It was only a few months after Mitch passed that I was asked to speak at PPMD’s international conference about our experience. A few doctors in the medical community told me how angry they were that Mitch passed away – but after hearing my address about my son, they realized Mitchell’s purpose (at least one of them) was about something much more – and their hearts were softened.
Anymore, I’m not afraid of death. In fact, in times of deep grief I have wished for it. But I also value life and the hope it offers. Though I have traveled broken roads of grief and sorrow, I have also discovered wells of peace and healing. It is not all terrible. I worry less about my earthly exit and more about how I exit.
The hard reality is none of us exit this life alive - and that is what mortals misunderstand. We confuse death as the end - but it is not. It is a return to our previous state. Death will come to each of us … and for most of us, we will see our loved ones go before us, some will even suffer greatly before they go. But everyone goes. Our hearts will be broken - sometimes more often than we think our hearts can handle. In our loss, we will long for the companionships we once enjoyed; Heaven knows how I ache for my son's hand.
The point is, sorrow will become familiar to each of us - and it will become our teacher or tormentor. In the end, we decide what meaning suffering has for us and whether it breaks or builds us.
This photo was taken almost exactly 3 years ago. It feels like yesterday, yet at the same time a world away. I have experienced so much sorrow and self-doubt between this moment and today. But I have learned a great deal and I'm not about to throw that away. That is what my son taught me ... I have today.
Little Mitch was less than 24 hours from being admitted to the ER. We would then learn he only had days left to live. After a rigorous battle in the cardiac intensive care unit, we took Mitch home to live out the remainder of his days where he was comfortable and surrounded by everything and everyone he loved. No time in my life has been more sacred than that time with my son. We were blessed to have him 3 short weeks … which were also the longest weeks of my life. My knees are still bruised.
I’ll never forget how little Mitch leaned into his mother’s embrace in search of comfort. As his parents, we were desperate to rescue him. He was in a great deal of pain as organs in his body reacted violently to his failing heart. It is a tender, terrible irony that a little boy who had such a loving heart would die from heart failure. Natalie held our boy in her arms, also in search of comfort. But there was none to take.
Over the next few weeks we would watch our once vibrant son wither away. I wanted to have that one last conversation with Mitch. I wanted to tell him for the last time how much I loved him and how proud of I was of him. I did tell him such things while he was home … but I wanted just one more. I wanted to tell him that when I grow up, I want to be just like him. I still do.
In 2012, the Thanksgiving prior to Mitchell’s passing we were at my in-laws at a family function. Everyone took a turn to share the one thing they were grateful for. Most parents shared their gratitude for their family and for God. Children shared their gratitude for toys, family and friends. When it came time for Mitch, he simply said, “I’m just thankful to be alive.” I recorded him saying that with my iPhone. I remember that it took a maximum effort to not burst into tears at that very moment.
Another bitter irony that a child who intrinsically valued life would have it taken from him so young.
Comfort and spiritual assurance came and went like a heavenly tide under the dim light of tender mercies. After my son passed away the sky, which was already pitch as night, drew darker still. There were times I sought after heavenly answers and peace … and I received nothing. It would take repeated efforts to reach heavenward before certain answers came. Looking back, I can see that my struggle to find answers and peace [peace, where there was none to take] … that very struggle taught me things I needed to know. I discovered things I would have never learned had answers and peace come at my beck and call, as though God were some kind of cosmic butler. He is no such thing. But He is a parent and a master teacher who understands nothing of value comes easily. Sometimes the answers we seek are discovered in the struggle itself.
I often hear or read statements like “choose happiness” as though it were possible to blithely lay down our troubles like heavy, unnecessary luggage and simply move on. No sentiment could be more naive or insensitive to those who are trying to find their way through the wilderness of grief and trouble.
How are we to find peace where there seems none to take? It isn't choosing happiness, first.
At least for me, I have discovered that when I first seek meaning and purpose, happiness eventually follows. More than happiness, actually; I experience deep joy and a calming sense of understanding. Yet, when I seek happiness first, I forever hunger for that which cannot satisfy.
Little Mitch taught me to first seek meaning and purpose, then peace will follow. Understanding will fill those places that seem so empty and hollow.
I’ll never forget the look on her face and the sound of her tearful whisper, lips trembling with sorrow, “Honey, how do we do this? I don’t know how to go on.” My heart, at least what was left of it, broke a little more. I whispered, “I don’t know, but we’ll do this together.”
Our sweet little boy’s body lay silent just a few feet away from us. Almost overnight we found ourselves living a nightmare from which we could not wake … a soul-crushing pain from which we could not escape.
Next to his casket sat Mitchell’s scooter, which once carried his weakening body, now suddenly carried an emptiness that filled the room. I couldn’t imagine grief becoming any worse than it felt that day. I would soon realize that I had scarcely tasted that bitter cup – for the wages of grief were just beginning. Night had not yet fallen.
Moments later, my dear wife and I would walk into the chapel and give the most painful address of our lives. Yes, heaven felt close that day, but I was also in hell.
A few months after Mitch had passed I went to a doctor to examine my elbow, which had experienced some unusual and intense pain. After a short examination he determined I had tennis elbow. Secretly, I was devastated – for something deep inside me was hoping it was something terminal … something to end the deep pain I felt every waking minute of my life.
Although there were times I wished for death, I also knew I needed to be there for my wife and children. I loved them just as much as Mitch, yet, a part of me yearned for death so I could stop hurting.
I was terrified of going to sleep or waking up – for that transition between wake and sleep often brought the unfiltered horror of losing my child into my mind and heart. Whatever progress I had made was lost in those moments of transition and it was as if I lost my son all over again. And again. And again. And again. Whenever that happened I would find myself in a state of panic and I would run to my son’s room and weep at the foot of his empty bed. I prayed every night that I could fall asleep and wake up quickly – so I would be spared such horrors of the mind and heart. Despite my pleas for relief, I was often not spared – and I spent many sleepless nights staring into the night sky in search of my Father.
Deep was the forest and dark was the grief; I stumbled over pebbles in search of heaven and peace. And when I was tempted to raise my hands and give up, I heard a loving whisper from my Father to instead look up. Surrounded in darkness, tears clouding the sky, I began to see with my spiritual eyes. What I saw is hard to describe … for I discerned a constellation of blessings to which I was previously blind.
Each blessing, a dim fleck of light, came into view of my spiritual sight. It didn’t matter however great or small, when I recognized these tender mercies something inside me began to arise and stand tall. I was not abandoned in darkness and grief – instead I was tutored to see heaven’s blessings and in them find a measure of peace.