I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.
On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.
Neither of us knew he had 48 hours left.
Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.
I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.
Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission.
Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down.
Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out.
You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.
At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.
Everything was falling apart. Mitchell’s vitals were on a steady and quick decline and all he wanted to be was a kid.
Death was clawing at our door and would soon find its way in. We had reached a point where we began to administer powerful drugs to mask the pain of organ failure. He was already on medication that erased from the mind oxygen hunger; else he would have felt out of breath, as though he were vaguely suffocating. With each dose of these new drugs, Mitch became more and more sleepy.
“I marveled at how she became a pillar of strength for my son and family. When I was a jellyfish, she was made of carbyne.”
We were in the middle of a dilemma: we wanted every minute we could have with Mitch, but we didn’t want him to suffer. To withhold medication so he would remain awake would have been selfish on our part, and would have caused our little boy pain. In order to spare Mitch unimaginable agony, we had to let go of what we wanted so that he wouldn’t suffer.
Mitch began to realize his medicine was making him sleepy, so he started to resist each dose because he wanted to be awake. He wanted to live his life – for he was glad to be alive. With tears running down our faces, we would explain to Mitch that the medicine would keep him from hurting. “But I just want to be awake. I just want to live,” Mitch would say in a soft, breathless tone. Then, not wanting to suffer, he would then take his next dose of pain medication and fall into a deeper sleep than the time before.
I can’t count the number of times I knelt, with bruised knees, at the side of Mitchell’s bed pleading with our Father to spare my son. And if he would not be spared, I begged that He would help my little boy to not feel scared or alone … that he would be given a measure of peace and understanding beyond his young years.
I also prayed that my Father would strengthen my feeble back so that I might learn to carry what I must. A weaker man he could not have chosen to bear this burden … for I was then, and remain today, imperfect and flawed. I didn’t feel capable of carrying such things.
So as I sat across Mitchell’s room, I witnessed two tender mercies that served as an answer to my prayers. Just after his dose of medicine, baby Marlie placed her head on Mitchell’s lap, ever offering tender affections. Natalie, my dear wife, sat softly next to Mitch and comforted him with a love only a mother can give. With her every gesture, it was as if she said, “Sweet boy, don’t be afraid, I will walk beside you.” I marveled at how she became a pillar of strength for my son and family. When I was a jellyfish, she was made of carbyne.
In this very moment, I suddenly saw life through heaven’s eyes. Though I witnessed my little boy suffering the effects of being mortal, I also saw two angels who walked beside my son … tender mercies from a Heavenly Father who loved and cared about Mitch. In that moment, I was overwhelmed with gratitude and understanding.
Losing my son has forced me to dig deep. Yet, this hardship didn’t weaken my faith, it strengthened it and rooted out the stuff that got in the way. Despite the darkness of death and the weight of grief … which has been soul-crushing … I am a personal witness to tender mercies. They exist. They are as real as anything I know.
Though I am still blind and weak, I have a Father who patiently walks beside me … ever generous with tender mercies. I pray every day that I will have eyes to see. For if He was there for Mitch, it might very well be that He is doing the same for you and for me.
“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.
Tiny Marlie stood bravely before Dragon, a much larger puppy. In Marlie’s mind, she was just as strong as her furry friend and always held her ground with a flurry of high-pitched barks and excited prancing. With one soft nudge of Dragon’s nose, tiny Marlie would topple over and roll into summersaults. Physically, she was no match. The moment she tumbled, she would jump to her feet and begin to bark as though nothing ever happened. In fact, she would bark like she was winning. Mitch smiled and giggled as he watched these two puppies play.
As I took this photo, the words crossed my mind, “Goliath and the little giant.” I couldn’t help but notice tiny Marlie as she stood bravely before her much larger friend, playful and strong. Marlie was a little giant – undaunted by what stood before her. In this same moment, I saw Mitch much like his puppy: a little giant of a different sort … a kind of giant you don’t see with your eyes, but sense with your soul. My mind then shifted to the ancient account of David and Goliath and what it meant to take fresh courage in the face of implacable odds.
I often wonder what crossed David’s mind as he stood in the long shadow of Goliath. I’ve heard so many variations of this quote that I don’t know who to attribute, but it has been said that courage is not the absence of fear, but the decision to act in spite of it. Did David’s soul shiver just a little bit at the sight of Goliath? Perhaps. Though small in stature as compared to his 9-foot opponent, David clearly possessed an inner strength and courage that cannot be forged by human hands or feigned by mortal hearts.
I did my best to teach Mitch that he was the son of a King and that he could call on Him for courage when the shadows of doubt grew especially dark or when his Goliaths seemed especially frightening. Mitch battled many Goliaths in his short life: he overcame fear, self-doubt, and a multitude of big and small battles – some so small they might seem insignificant to the casual observer, but to him, they were towering and he faced them bravely.
I sometimes wonder if mortals have life a little backward. We seem to measure so much by the accomplishment of big, visible things … the job promotion, the new car, or any number of accolades. Surely the big battles matter, but I’m persuaded that the little battles matter even more. Sometimes the big battles we face come because we ignored the little battles along the way. In like manner, victory is almost never achieved overnight but instead by little victories won over many days and nights. None of this is new thinking, and it has been said a million times by a million people. But we are human, and we are prone to forget. Perhaps, when we finally see with heaven’s eyes, we will discover to our great surprise that the little battles were really the big battles.
When confronted by his personal Goliaths, Mitch eventually won every battle with dignity and grace. Notice, I used the word "eventually". He didn’t always win at first, but he kept trying until he ultimately won. The one battle, however, he couldn’t win was that with death. As Mitchell’s final Goliath towered over him and stretched its long shadow, a shadow black as a moonless midnight, I admit I trembled with fear and anguish for my son. I cried out to the heavens, “Take me! Take me!” as though I could distract the Goliath of death and persuade it to come for me instead.
Like David, Mitch faced his ultimate Goliath with a kind of courage that cannot be forged by human hands or conjured up by mortal minds. Instead, he was strengthened by his knowledge of who he was and to whom he really belonged. Though Goliath was huge, David was filled with faith and a certain knowledge … which made him even huger. Mitch, too, was a little giant.
As I examine the past to learn and focus on my present to do, I have discovered one thing, maybe two. If Mitch could stand before his Goliaths, victorious, I know that I can, too. From the Goliath of grief to the quest for peace, I know this one thing is true: the little battles matter both for me and for you.