Mitch had been home about a week and a half and his 5th-grade teacher, Mrs. Masina (on the right) came to visit. With her was also a teacher at the same school, Mrs. Edwards, who was a friend to Natalie. I sat in awe of these two women who took time from their personal lives to show Mitch they cared. They were so sweet to him; although they gave Mitch some thoughtful gifts, the greatest gift they gave him was their love. At the end of the day, things break but love lingers. Love lasts.
As Mrs. Masina left she turned to Mitch and asked if he wanted some homework to do. He smiled softly and nodded as if to say “no thanks”. Everyone chuckled but inside I wished he had homework – for that would have meant he was going back to school and that there was hope he would recover. But he was not ever going back to school and the hope he might beat heart failure and DMD was a distant dream far from reach.
As we left the hospital the senior cardiologist said with tears in his eyes, “Your job is to take him home and love your little boy with all that you've got. You don’t have much time.” And love Mitch we did, the very best we knew how.
As these two beautiful women left our home I remember feeling overwhelmed with feelings of love and appreciation for the good people in my son’s life. I was grateful for all of the teachers Mitch had, for they were all loving and kind. But his last teacher, Mrs. Masina, was a special tender mercy in more ways than twenty. She will forever be close to our hearts because of the way she lifted our little son’s heart.
I can’t help but be grateful for what the truly great teachers teach us; the ones who beautifully balance intellect with heart, mind with soul. Mrs. Masina is just such a teacher. I saw a spark in Mitch that I hadn't seen before – a deeper belief in himself – and I believe that spark in my son was because of the way she taught him. What good is knowledge, after all, if we forget what it means to be human? To be human is to be vulnerable, real and feeling – it is to accept ourselves and others as we are, broken and imperfect, and then strive to be a little better each day in our own way. That is what the great teachers teach us.
Mrs. Masina did just that. She not only taught Mitch – but she taught me that there is much more to life than academics. I am grateful for the gentle teachers of the soul: Mrs. Masina and Mitch have been my teachers and I am forever in their debt.
One thing I've learned is the death of a child is emotionally catastrophic. I know of no greater pain. Now that Mitch is gone our family has grueling homework of our own: the homework of learning to live with grief – which, as far as I can tell, is the work of a lifetime. There are no shortcuts. There are no opt-out tests. Every day is a lesson on love and loss, healing a little, crying a lot, and learning to move forward however fast or slow our hearts will take us.
Because love lasts, so does grief. So long as I love my son I will grieve his loss … and what a terrible grief it is. But grief is the price of love and love is worth every tear, every shard of my broken heart, it is worth the agony of loss. The love in my heart hurts me and heals me all at the same time. I am learning that to hurt is to be human and to heal, even if only a little, is heavenly.
It was the last day of November and we were about to head home, for our time at the family ranch had drawn to an end. Little Mitch asked if he could drive a 4-wheeler one more time. I had no idea it would be his last time. Because Mitch didn't have the muscle strength to run or ride a bike like other young boys, he anxiously sought after other ways to feel the rush of wind through his hair and on his face. Riding 4-wheelers helped him do just that … and Mitch felt powerful and strong, even normal, if only for a moment. Had I known this was his last opportunity to do what he loved so much, I would have foregone meals and work and sleep for days-on-end in order to help him drink in as much life as humanly possible. We simply didn't know what little time was left, we just did the best we knew and hoped we passed the test.
As we prepared for what would be Mitchell’s last 4-wheeling adventure, this sweet little boy sat quietly in his grandmother’s garage and put his shoes on. The chair upon which he sat had deep cushions and nearly swallowed him up. Without complaining, Mitch silently struggled to get up from the couch but he couldn't – his muscles were much too weak and the cushions comfortably deep. Ethan noticed his brother quietly struggling and in need of help and quickly ran to his aid.
This was a simple exchange that was over in the blink of an eye. Had I been outside, impatiently yelling for them to hurry up, I would have missed this silent sermon of love and service between two children. What’s more, had I been outside honking my horn anxious to complete the task of spending time, I would have missed the point of everything … for riding 4-wheelers wasn't the point, even though little Mitch loved it so, it was doing things together with love. That’s all that matters in the end. It is something of a heavenly paradox that while we raise our young children, they are also raising us; for I am a very different person from the young gallivant I once was so many years ago.
As I watched this spontaneous act of brotherly love, it occurred to me in the most profound way Mitchell’s journey was also the journey of our family. Though Mitch walked alone with DMD, because nobody could do it for him, we walked beside him and cheered him on and did our best to clear the path for him. Our lives were inseparably connected, our journey’s intertwined, yet how much pain and sorrow we would come to know had never crossed our minds.
While Mitch had some best friends in his life, there was none so great as his older brother. These two boys were a match forged in heaven and Mitch loved him deeply. If ever I am tempted to complain about what has gone wrong in my life, I need only look at what has gone right. Ethan was a tender mercy for my son and when I think upon that gift alone, something gone right, I cannot help but weep for gratitude. For I am reminded that I have a Father who cares enough to give little comforts no matter how big our troubles seem.
Since Mitchell’s passing I have noticed whenever Ethan sees a photo or video of Mitch I see a softness fill his countenance that is distinct and visible. There is a tenderness and admiration in his eyes I don’t normally see in anyone, for any reason. Ethan loves his little brother just as much as Mitch loves him – and that makes my heart sing. As cool a young man Ethan is becoming, I pray he never loses his softness; for softness is the fertile soil upon which relationships grow deep. I also hope he never confuses softness for weakness – they are not the same. Not at all. I think Mitch was just as much a gift to Ethan as Ethan was to him.
Mitchell’s Journey has taught me to take great comfort in the little comforts, for they all add up. When I look at this simple image of two young boys meant to be together, who learned how to lift each other in different ways, I begin to see the bigger picture. I sense we are not left comfortless, neither are we alone. Faintly, as quiet as a whisper can possibly be, I hear something and it is heavenly.
This afternoon Natalie and I went to Primary Children’s Medical Center to visit another young boy who also has DMD and is struggling with heart failure. I didn't take photos of this family out of respect to their privacy, though I was strongly tempted to document their story. What happened to our sweet Mitch is happening to many, many other young children – and we want only to help them the best we can.
As Natalie and I stood outside the CICU waiting for security to let us in, my tender wife clutched the small gift she brought this boy, closed her eyes and gathered herself – for we were about to enter a place very near to our broken hearts. Just past this door and around the bend was Mitchell’s room where a medical team fought to save our son. Behind this red door was the very place we learned our son had days to live and our lives and hearts would become forever broken.
As the doors opened it felt as if we walked back in time. Part of me anxiously peered into Mitchell’s CICU room in hopes of seeing him – instead, I saw a tender infant in the very room that was home to our little boy. As we greeted the family we were there to see, we spoke with this young man a while. He was listless and tired and struggling. Our hearts went out to this young boy who, like Mitch, only wants to live. Our hearts also went out to his parents who love their son so very much. As we said our goodbyes in the hall our hearts were heavy with sorrow and overflowing with love for them.
As we left the hospital I couldn't help but retrace in my mind our journey home with Mitch – when he left the hospital to die. That was his last trip home and the longest commute of our life.
We don’t shake our fists at God for taking our son … His son, home. Instead, we kneel and thank God we had little Mitch in the first place and that because of him our hearts are filled with more love than ever before.
I believe sorrow can be a teacher, turned gift, if we allow it. There is a divine purpose to suffering and struggle if we listen with our hearts. Yet listening with our hearts can be difficult, especially when they’re trembling in sorrow. But, once we quiet our minds and listen with our soul, we will see our sorrows aren't meant to hurt us – but instead our hearts shape and mold. Though we lost our son and weep in grief, we have learned a deeper kind of empathy than we know how to speak.
I don’t know the future of Mitchell’s Journey, or the journey of our family in the years to come. I only know we want to lift and love others – that is what our sorrows taught us.
In ways we never knew possible … we care
It was only a few years ago we were in Wyoming to spend time with family. My father-in-law was born in Wyoming but lived much of his life in Utah. As his retirement neared he decided to purchase a small cabin deep in the vaguely flat fields of Wyoming. At first I thought it a strange move and often wondered why he purchased a place out there. Then it occurred to me how, at some point in our lives, most everybody yearns to go home. Suddenly I understood.
So on this mid-Saturday morning, sitting in this small cabin filled with all manner of children, grandchildren and in-laws I saw something that swept my heart to the heavens and back. I had just sat on the couch for a bit to write in my journal when I noticed through the chaos of people and things a tender conversation between Mitch and his grandfather. This was the same grandfather who, just a few years later, would give Mitch a puppy to call his own, just weeks before he died. You can watch that sweet exchange here: vimeo.com/58228257
Mitch had just painted a hat and was showing his loving grandfather what he had worked so hard to do. I could tell by the tender look on Mitchell’s face he appreciated how much grandpa cared. Though I was surrounded by the noise of 15 people scuttling about the activities of the day, time slowed down for me and I watched this quiet exchange with tears in my eyes. I hid my face behind my camera, so as not to be noticed or draw attention. I was so grateful for the love and quiet attention my son received – for this moment, among many others, shaped him.
My father-in-law has no idea this picture exists and I am quite certain he doesn't remember this ordinary, but beautiful exchange. But I remember this and many more like them – and I have photos of them, too. These moments remembered are like bandages that bind up my broken heart. They remind me that my son had a good life and that he was surrounded by people who loved him – and Mitch felt it. These happy moments give my heart, stricken with grief, a moment of peace and sweet release.
As I look upon this nearly invisible exchange, a conversation that lasted no more than 2 minutes, I am reminded why we are here in the first place. I can’t help but wonder if the Father of our souls lovingly looks at our own messy efforts, despite how critical we might be of ourselves, and is pleased to see we did the best we knew how. Mitch did the best he knew how, and it was perfect. Nothing more could have been asked of him – I was so proud of Mitch.
The older I get the less I fixate on perfection and the more I am satisfied with growth – however fast or slow. I know many perfectionists whose greatest weakness is perfectionism. They are tyrannized by order, symmetry, and technical flawlessness – so much so, their appetite for perfection bleeds into their human exchanges and they often miss the point of things and damage relationships. Oh there’s a time and a place for perfection; I expect a bridge, or a building, or an aircraft be engineered perfectly. But in matters of the soul, we tend to build and rebuild ourselves with materials we cannot see – which makes the struggle of human growth woven with great difficulty.
At least for me, life is an exercise of trial and error, failures and triumphs, stumbling down and getting back on our feet again. In the end, I believe we’ll all come to know the purpose of life is to gain experience and grow. One day, in that place beyond the hills, I believe we will look back on our own struggles and see how, because of them, we were made stronger, more compassionate and more like our Father.
I’ll never forget Mitchell’s messy hat, colored with chaotic splotches from his young, inexperienced hand. It was perfect. Nor will I ever forget this seasoned grandfather, a man who quietly longed to be home, who offered love and attention to my son. Though, mortal and imperfect, in that moment he was perfect.
I hope, at the end of my days, my Father will see far past my weaknesses, which are many, and look upon my heart; for there is love in there, it has been that way from the very start.
I am grateful for this sweet exchange, and many like them, that remind me to look for perfect moments, not perfect people. Perfection, at least in matters of the soul, has more to do with effort than exactness – the invisible things we do, over time, that shape our heart, minds and souls.