This was the summer we took our kids park hopping. I am sure many others do this, but it was a special family tradition we liked to call our own. Each Monday evening we’d pack a picnic and drive to some random, undiscovered park and explore the jungle gyms and grassy fields and have dinner there. Because each park was unique it never got old.
Mitch had the most endearing, mischievous side to him. Though I am terrified of spiders, I find myself catching and keeping them to study and observe. Mitch, knowing my fear of spiders, would often put large plastic spiders in strange places around the house. He would never put them in obvious places, like in the middle of a room for all to see. Instead, he put them in the shadows, barely out of view … or in corners and other places you would most likely see them. I fell for every one of my son’s little traps. When I would stumble into one I would always scream out in terror – only to hear Mitch down the hall or in another room giggling that I fell for another one of his shenanigans.
On this evening we were visiting some undiscovered park. Little Mitch saw that Ethan was about to drink from a fountain. Knowing the water pressure was unusually high he quickly approached Ethan from behind and turned the water on full blast, squirting his brother in the face. Mitch ran away laughing. Ethan was a good sport and laughed with him. They were the best of friends.
My memories with my family are as warm to my soul today as the evening sun was on my face back then.
I've never felt it a burden to spend time with my family. To the contrary, I have always considered time with them an investment that would pay a lifetime of dividends. When I look at images like this, and remember those good times, I cash one of those emotional checks and my heart is filled to overflowing with gratitude.
Perfect moments, you know … the kind you wish you could bottle up and save forever, they come and go so quickly. I wish they’d stay forever – but I know that’s unreasonable. I guess that’s why I’m always on the hunt for them. I suppose, after all, that is how it should be … because what is rare is valuable. To think that our children are more than rare … they are unique in all the universe … which makes them valuable beyond mortal description.
Just last night I took Laura-Ashley on a daddy-daughter date. We went to dinner and a movie and had a great time talking. As we drove home we passed the cemetery and she said when she takes the bus home from school she’s always sure to sit on the side of the bus where she can see Mitch. I smiled and said, “Mitch sure loved you, Ash.”
We both talked about her little brother for a while; we laughed at the funny things he did and said and recalled our favorite adventures together as a family. I wasn't sad (well, deep inside I’ll always be sad that he is gone) … but my heart was so happy and it was overflowing with love and appreciation for my family. I was grateful that I had Mitch – even if only for 10 years. At the same time I was grateful I had Laura-Ashley – and that she is turning into a wonderful young woman with whom I am so proud. I told my daughter how much I loved her and how proud I was of her. I hope she felt the meaning behind my words – for words, too, are mortal and flawed.
I am grateful for perfect moments back then and today. I do all that I can to scoop them up and treasure them before they evaporate. And while my cup is cracked and tattered with grief and weakness, it still runneth over … far beyond what I deserve. And I am grateful.
My daughter took these photos the day after Mitchell came home. He was so excited to be surrounded by all that was familiar to him. Most importantly, he was grateful to be with his family – for above all else, family is what he loved the most.
My wife and I were anxious to hold, hug and kiss him without the spider web of cables, tubes and IV’s. It was a surreal time for us. 48 hours prior to this very moment Mitchell had a team of 12 medical professionals all working vigorously to keep him alive. At home he had 1 hospice nurse whose job was to help him feel comfortable and usher his body through the painful process of organ failure and death.
For Mitchell, touch was very important to him. There was no blanket that could replace the warmth that came from his parent’s embrace. Ever since he was a baby he would rub his forehead against mine -sometimes for minutes at a time. He wouldn't say a word and neither would I; we didn't need to. We spoke more in our silence and gestures than could ever be communicated by words alone. This was one of his ways of loving deeply and I never tired of it. I yearn to do it again today and my heart sinks to the depths of my soul that I cannot.
Within a few days of this photo Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne. He had an appreciation for the little things in life and I admired that about him greatly. A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted …
I will never smell things the same again. Never a scent my nose encounters that I don’t thank my God for all that I have.
Over the last 2 years I would occasionally ask Mitchell what advice he would give people about life. Without fail he would respond “Be nice to each other and be glad you’re alive. Nothing else matters.” With this philosophy he never varied. I found it fascinating that a child so young was so attune to the intrinsic value of life. What’s more, he understood the deeply spiritual value of kindness. Most young children seem to worry more about play things and consumption (perhaps too many adults do, too) – but Mitchell possessed a sobriety about life and relationships that was far beyond his years. It was as if his soul knew what was to come long before his mortal body failed him.
I was raised to accept the reality life is tough, because it is. And at some point the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal; a part that loves deeply and hurts honestly.
Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating.
Three weeks after my daughter took these photos, Mitchell’s weary and scarred heart, after having fought valiantly to survive, fluttered and stopped.
I would give everything I own, or could ever hope to be, to have my little son back with me. His broken heart, a heart that loved deeply and hurt honestly, was more noble and worthy than all the lions and bears on earth. Mitchell reminds me what it means to be human and that the lions and bears we often pretend to be are just a mirage. My son taught me there are no lions or bears, only humans … and to pretend otherwise is to cheat others and ourselves.
One day, when we all have eyes to truly see, we’ll come to know there was so much more to mortality. That to be nice to each other and grateful for life are among the prerequisites to spiritual sight.
Summer, at least in my part of the world, is coming to an end. I can feel the whisper of winter on the back of my neck and the sweet smell of fall is almost in the air. While I sit on the verge of a change in seasons, I can’t help but remember a warmer time - a time before hell – when I had my son with me and we went on an adventure.
We set camp in the west desert, far enough from city lights that you could see deep into the starry night. The heavens were almost close enough to touch. I remember talking to Mitch after we were tucked in for the night and looking through the net of the tent into the heavens, I asked, “Mitch, don’t you wish we could scoop up those beautiful stars and put them in our pockets like little glowing rocks?” Mitch smiled and said, “That way, when it is dark we could always see.” Mitch then burrowed into me and closed his eyes. He was the best at cuddling. I miss that.
Mitchell’s love of atmosphere and moods was one of the reasons he loved sunsets so much. On this evening the atmosphere was particularly beautiful because of some deep contrasts in color and light because of a passing storm. In every direction, save where the sun was setting, we found ourselves surrounded by towering clouds that stood like floating giants. They cast deep shadows beneath them and the contrast of light and color was thrilling to see. Each tower was also flashing with sheet lightening. In almost every direction these beautiful clouds stretched far into the horizon.
I remember wanting to take photos of the amazing sky and thought to myself, “I’ll take photos of the storm in a few minutes.” Before I knew it, it was dark and the beautiful sky that entranced us was forever gone. I regretted not taking that photo in the moment. Lesson learned.
With Mitch and my other sons cuddled next to me, we drifted to sleep. The next morning I awoke in tremendous pain - it felt like an elephant had stepped on my chest and broke my ribs. I had difficulty breathing and wondered if I had been stung by a scorpion (we caught one later that morning) or something else. As we broke our tent down I discovered I was sleeping on a jagged rock – which explained my sore ribs. I realized at that moment I should pay closer attention to where I set our tent. Another lesson learned.
After we arrived home, covered in desert dust and dry skin, I remember finding a pocket full of rocks in Mitchell’s pants. He had quietly collected little stones form the desert as souvenirs. I still have those little rocks in a special place. When I look at them I can’t help but wonder what he saw in each of them. I will forever wonder.
When I think back on moments like these, camping with my kids, I have the fondest of memories. Not all of them were wrapped in majestic sunsets and perfect moments cushioned in comfort. In fact, many of our camping trips were rather hard. We have camped in the bitter cold, high in the winter mountains; we've weathered torrential rainstorms, worried we would be swept away by a river of rain; and we have awoken to inches of new snow and many other surprises. Each was an adventure punctuated by difficulty and discomfort … yet is each a memory I am so grateful to have.
I have noticed something interesting with Mitch and my other children. Often they would draw pictures of memories they had; and with their little hands they would sketch out our campsites and recreate the most difficult moments while camping … moments that were less fun while in the moment.
I wondered why they would sketch the struggle and I asked them to tell me about their drawings. Each would say in their own way, “This was my favorite campout.” They would then explain what they loved about it. I was always surprised. These little kids with a pocket full of rocks appreciated the experience, however difficult, more than I gave them credit. I couldn't help but wonder if they were teaching me something important – that in the struggle is also the beauty.
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.