“Dad … can I sit by you?” Mitch said softly. It was mid-January and I was working from home that day. “Sure Mitch! I love it when you’re near me.” I then patted my hand on an extra chair, inviting him to sit with me. Mitch sat down holding his baby puppy close to his chest. Marlie looked at me as she snuggled deep into his arms. Mitch thought himself blessed to have a furry friend like Marlie.
I turned my camera toward Mitch and he just stared into the lens. He didn’t try to posture himself for a photo – he did exactly what I always wanted … absolutely nothing. You see, Mitchie knew I wanted to capture moments unrehearsed … I wanted to capture life, not the imitation of it. So, Mitch gave me the moment.
His almond eyes and soft expression my heart melted. In this same moment he gave me a curious look as if to say, “Dad, something’s wrong.” He didn’t need to say any words – I sensed it, too. Like a cold wind from the north, I felt a brooding sense that we were on the edge of a great and terrible change and my soul began to shiver. At the time, I didn’t know what was about to happen, I just knew something hard was coming. How hard, I knew not. For almost 2 years this feeling was growing. Looking back, I believe heaven warned me and helped me make the most of time I might have otherwise squandered.
As death drew closer, Mitch would begin to ask me deep questions about the purpose of life, death and what happens when we die. At the tender age of 10, an age that he should have been playing with toys, he faced the stuff of philosophers and theologians. He wanted to understand what too many adults often dismiss for cheaper thrills.
In less than 6 weeks from this photo, Mitch would lay on his bed unable to open his eyes or speak as his body was shutting down. It is frightening to think how quickly our worlds can be turned upside down and inside out.
This same puppy who was at first frightened to be away from her mother, received great comfort from Mitch, and would soon return the favor with honor. The night he was slipping away, she would use her nose to lift his hand and nestle under his palm as if she knew he needed to touch her. Though he couldn’t open his beautiful eyes, he could move his fingers slightly. So, there on the side of this sacred bed, I filmed Mitchell’s tender fingers running softly through her baby coat. Eventually, when the end was upon Mitch, this little puppy curled around his head on his pillow. Then, within an hour, my baby boy slipped away.
I am a simple, flawed man and I don’t know much; but I know a few things for sure. One thing I know is, we are not alone. I know it all the way to the marrow of my bones. The moment I first laid eyes on newborn Mitch, my Father warned me with a distinct impression something was wrong. That impression persisted for three years until his diagnosis. Then, almost 2 years before he passed away, my Father returned and began to stir my soul with a great uneasiness. I didn’t know all that He was trying to tell me, I only knew He was preparing me for a spiritual winter. A time where darkness would become my home. Then, as my spiritual eyes began to adjust to the darkness of grief, I began to see little flecks of light … little tender mercies. Though I was in hell, I saw evidence of heaven and a Father who cared.
Yes, my heart is still broken and my soul is weary with grief. I long to find my son so that my mind might find some relief. My soul searches as if he were lost in some great wilderness. But alas, it is not he that is lost, but me. So I journey through the wilderness in search of heaven. I pray for ears to hear and eyes to see. Somewhere, out there, my little son waits for me.
“Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things.”
The summer before Mitch passed away, Natalie and I took our kids on an adventure in southern California. Mitch, tired of using his motorized scooter, wanted to stand and go down the escalator by himself. For a moment, he wanted to feel normal again.
Before he stepped onto the escalator, Mitch said, “Dad, will you go with me?” I smiled and said, “I would love to.” Mitch went first and I immediately followed. A few seconds later, he turned his head to make sure I was with him.
Mitch often made glances as if to say, “Are you there?” Though he was brave, he didn’t want to be alone. No child does. So, I always tried to be there for Mitch and my other kids. I was, and continue to be, less-than-perfect. In fact, I wish I could do a lot of moments over. But I tried, and I keep trying.
As a father, I knew it wasn’t practical to be everywhere, all the time, with my kids. I had to learn to do what my brother-in-law taught me years ago … embrace a philosophy of selective neglect. That is to say, when work requires, I have to neglect other aspects of my life so that I can support my family. And when my family needs me, I will set aside work so that I might be there for my wife and kids. It empowered me to say “No” … or “I can’t” … or “I won’t.” It also taught me to say, “I will,” “I can” and “Yes.” Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things. If I were forced with an ultimatum to choose between work and family, work would lose every time. Fortunately, life isn’t that dramatic and most of us can find a healthy balance that works for our own family dynamic.
For every photo I have of Mitch, I have just as many of my other kids – each with a story of love and faith of its own. As I look through those photos, I can see each of my children doing this same thing as Mitch did in this image … possessing a quiet look as if to say, “Are you there?” From school programs to athletic competitions, my kids have always looked into the vast audience of onlookers to see a glimpse of mom and dad and to make sure they weren’t alone. To make sure we were there, supporting them. Loving them, not just in theory, but in practice.
Time and attention, service and sacrifice; these are the ingredients for love. These ingredients come from focus and effort.
For me, being there isn’t just about being physically present … it’s about being emotionally and spiritually present with my loved ones, too. Being present isn’t always easy for me; I worry about payrolls, client deadlines, employees, projects, investors and a mountain of other things. At any given moment, I’m managing five catastrophes, 40 brush fires, and 1,000 mosquito bites. And that’s just the tip of the iceberg. For me, being present takes work. If I’m not careful, I can come home from work, yet never really arrive. Being present requires me to prioritize and remember that some things matter more than others.
So, on this sunny afternoon, I practiced selective neglect; I set aside work things and lesser things so I could give Mitch and my family all of me. They are my everything, and I can’t think of a time in my life I regretted living that core value.
As Mitch turned his head and glanced at me from the corner of his eye, he wanted to know his father was with him … that he wasn’t alone. I knew Mitch was in trouble. I also knew time was short – but how short, I knew not. I only knew I had that moment, so I gave him all of me.
I am guilty of many imperfections, and I wish I were a better human than I am. And while I try to sort out my own personal growth, I will always try to be there for my family, however imperfectly. When my kids turn their head, I want them to see a familiar face smiling back at them, loving them and cheering them on.
“There are fringe benefits that come with being engaged, industrious and self-sufficient. It may sound ironic, but in many ways, I believe these fringe benefits are the greater benefits. The wood we burn will disappear, but what we become by preparing it will forever endure. That is a recipe for living.”
Whenever Mitch went to the public library with his mother, he would always add a cookbook to his checkout. Tucked between a pile of books on amazing facts, science fiction adventures, and other boyish topics … a how-to-cook book was always in his mix.
Natalie would then drive to the grocery store and get whatever ingredients we didn’t have at home so he could create something delicious. Once he had the raw materials, little Mitch would quietly get to work. He was independent and seldom asked for help. DMD had weakened his arms considerably, so he didn’t have the physical strength to lift and pour a gallon of milk, but he could do most of everything else. Had Mitch not died of heart failure 3 years ago, by now he would likely have very limited use of his hands and barely the strength to lift a spoon. That is what DMD does to these beautiful children.
For Mitch, cooking was like assembling culinary Legos; he loved the challenge of following instructions … except when he was done cooking, he got to eat and share his creation.
I always loved walking into the kitchen to see my little boy whipping up some recipe. He had cooking down to a science; when he needed to microwave something delicate, he knew exactly how many seconds to heat the item and how long it needed to rest. I remember when he told me in his sweet, soft voice exactly how many seconds it took to perfectly melt cheese for nachos, warm a frozen burrito, or melt butter.
Mitch had an appetite for learning, doing, and becoming. He often reminded me of Henry Ford’s sage wisdom, “Chop your own wood, and it will warm you twice.” There are fringe benefits that come with being engaged, industrious and self-sufficient. It may sound ironic, but in many ways, I believe these fringe benefits are the greater benefits. The wood we burn will disappear, but what we become by preparing it will forever endure. That is a recipe for living.
When I look at this picture of little Mitch, I can’t help but think of the many recipes for a good life. I don’t think the recipe for a good life is much different than any recipe for a good meal … for each is different and the ingredients are unique to the dish.
The ingredients for someone with a disability will be different than that of an Olympic athlete … for their steps and victories will be different, but the principles the same. Although little Mitch lived a short life, he taught me about some ingredients that I try to use every single day:
• Follow instructions, learning from others who have figured something out is always the better path.
• Get busy doing something, nothing gets done when nothing gets done.
• Work hard, for whatever you build is also building you.
• Be kind, for when you sweeten the life of others, you can’t help but taste of that sweetness, too.
• Help others along the way, for the heavenly paradox is when we help others, we help ourselves.
• Be patient with others, for they are struggling to change, just like you and me.
• Sprinkle gratitude over everything, for gratitude begets more gratitude, and that is a good thing.
• Trust the process, though long and hard our struggles might seem, life’s difficulties will make us stronger, if we’ll allow it.
I remember laying by my son in his bed the night before he passed away. He was in a deep sleep and all I wanted to do was wake him up so that I might have more time. I couldn’t wake him, so I just cried and held him in my arms and wet his pillow with my tears. In that moment of quiet agony, I thought of ordinary, yet beautiful moments like this … where Mitch loved life and tried to make the most of everything. I vowed then, and vow again today, to make the most of every moment … so one day I can say, “I followed the recipe and lived a good life.”
“It’s okay, Mommy.” He said those same words just a few days prior when he told my wife and me that he didn’t think he could survive. In his moment of realization … when he knew he wouldn’t survive, he didn’t seek comfort from his mother … instead, he handed it to her selflessly. ‘I’ll be okay, Mommy.’”
Natalie had wept for a few hours. Exhausted from grief, she curled around her young boy’s head as if to comfort him – even though she was in the depths of hell and very much in need of comfort herself.
There, in the quiet of a winter night, the world had fallen away into oblivion … and all that remained was our son whom we fought valiantly to save, but could not. As the warmth of his body drew cold, darkness gathered round us. How pitch black that darkness felt, I have not words to describe.
Just then, in that moment of profound agony, when hell seemed to open its mouth wide open … as if to swallow us whole, something sacred happened. Natalie felt a distinct impression that Mitch lingered … that he was with her in Spirit and she felt as if he whispered, “It’s okay, Mommy.”
Comfort was his parting gift to his mother’s weary and broken soul. Comfort, and a knowledge that he still lives and loves her and that, at times in her life, he will be near to help.
“It’s okay, Mommy.” He said those same words just a few days prior when he told my wife and me that he didn’t think he could survive. In his moment of realization … when he knew he wouldn’t survive, he didn’t seek comfort from his mother … instead, he handed it to her selflessly. “I’ll be okay, Mommy.”
I don’t know why such heavy things were placed on his tender shoulders, for he was an innocent boy of deep faith and enduring goodness. He was honest, faithful and true. At 10 years old, he was everything I have ever hoped to be. Yet, he died.
Some might say God is cruel or indifferent by letting such hardships happen to children. What they forget is that nobody makes it out of here alive. What’s more, the purpose of life is not to build homes and garnish them with material things. We are here to struggle and walk by the dim light of faith … and in our struggle, we will be made strong. That is an immutable law of nature that not only applies to our bodies and minds, but our souls. Struggle makes us stronger.
I have always appreciated the words of the French philosopher Pierre Teilhard de Chardin, who once observed, “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” Those are words to remember, especially when our bodies fail us and those we love.
I don’t know the meaning of all things, for I am yet a child who is learning to hear the voice of his Father. While I have much to learn, I have discovered a few things as I have stumbled in the valley of the shadow of death. I have come to know things I cannot deny: I know we are loved by a Father in ways we cannot yet comprehend, but I have felt a portion of that love and it has changed me from the inside out. I know that our spirits live on, for my dear wife and I have felt the presence of our son. I know that those who go before us can visit and offer us comfort in times of trouble.
As ancient Elisha once observed, “Fear not: for they that be with us are more than they that be with them.” I hope that my spiritual eyes will be opened so that I may see what is often hid from sight while living in mortality. I will always remember this dark winter night when my wife sensed our son’s presence, just beyond mortal sight. “It’s okay, Mommy” … a comfort and plea … whispered from a sweet little boy who wanted his mommy to see.
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NOTE: I gave this to Natalie on Mother’s Day. We both wept as we reflected on this sacred evening where there was both the darkness of grief and the light of God. This art will be part of a book I plan to release later this fall.