With each visit to the hospital, we became progressively more nervous. The news was never good, and always worse.
I made it a priority to go with Mitch to these doctor’s visits. I knew what was at stake and no business agenda was more important than supporting my little boy and my aching wife. I never wanted him to turn his head and find an empty chair next to him, where his father should have been when he needed a shoulder to lean on. I never wanted him to feel alone.
This was the day we learned Mitchell was in serious trouble. He didn't know it. He felt normal. And until his last month, Mitchell was never sick – which surprised his cardiologist, because he should have been profoundly ill. For this we were grateful and counted it among the many tender mercies we've received along this difficult journey.
After his ECHO we sat in an examination room waiting for the results. As I was fussing with my camera bag I noticed out of the corner of my eye, through the reflection of a mirror, little Mitch and his Mom playing catch. He giggled as they tossed a stuffed parrot back and forth. He loved parrots and he loved playing catch so this was a double-win for him. Natalie could have given him a digital pacifier (like an iPod) and she could have disappeared into a magazine or Pinterest as a means of escaping. Instead, she gave him all the love and attention she had – no matter how exhausted she might have been. It’s been said that the greatest act of sincerity is to give someone 100% of your attention. My sweet wife has always given our children 100% of her mind and heart.
To Mitch, little things were big things. A simple hug, a squeeze of the hand, a warm facial expression – everything meant so much to him.
Last summer my daughter quietly followed Mitch as he walked into his room only to discover a hand written note I put on his bed that read “Hi Mitch, I just wanted you to know that I think you are awesome and I love being your dad”. Peering down the hall under the cover of shadows, she quietly saw Mitch sit on the edge of the bed, read the note as his eyes filled with tears. He sat there for a bit, visibly touched and crying, wiping his eyes and then carefully placing my note in his night stand next to other things he treasured. I had long forgotten that I even gave him a note that day and had no idea it would touch him like that. It was a simple note … not very profound and my only hope was to give him a momentary, invisible hug while I was at work. But for Mitchell, it was more than that.
My daughter told me about this a few months ago and upon hearing this story I began to cry. It is a strange thing to have your heart break and swell at the same time.
Jupiter, it seems, is a place of paradox.
When I look back upon our life with Mitch and my other children, it was never the big trips that carry the sweetest memories. Often it was the impromptu campouts, the conversations on the grass, playing board games around the kitchen table and throwing a Frisbee at the park at dusk. It was playing “I Spy” in the car on the way to grandmas or trying to catch frogs with a butterfly net and screaming when they jumped out. It was playing catch with a stuffed parrot in the hospital.
These are little moments that are so easy to pass by. But they are the moments that carry the biggest memories. At least for me, these moments often came at the expense of convenience.
Earth, too, has its share of paradoxes: little things being big things are one of them. And the little things ... the invisible things … often make or break us.
I believe one day, when we've all passed on … when the fog is lifted from our spiritual eyes … we will look back on this life and wonder why we put so much energy into the things that are of least importance. I believe we’ll see with great clarity … that big things (by the world’s standards) were in fact the smallest of things … and the little things were the biggest.
This little moment between Mitch and his mom was then, and remains today, enormous. Within 4 months of this photo being taken our sweet little boy would pass away. We had no idea how precious time was. We are glad between this moment and his last he had many, many little moments that were big moments. Moments money cannot buy. Moments we will never forget.
I am deeply grateful for the little things.
In a letter addressed to my family November 7, 2012 I described an invisible cliff upon which Mitchell sat but couldn't see. My wife and I could see it ... and we could see the mouth of the abyss yawned and inching to devour our son. Mitchell, unaware, looked out into the vast horizon envisioning a long, bright future ahead of him. In his little mind he was making big plans. He didn't understand that he was sitting on the outermost edge of the cliff and the ground from under him was crumbling away into the darkness. His body was hanging on by a pebble. What he thought was the beautiful horizon of the future was a mirage and in reality the sun was setting on his own life.
Almost 3 months to the day, all that I wrote had become a horrifying reality and my son was admitted to the CICU for end-stage heart failure.
During our time at the hospital and at home we carefully and prayerfully managed information for Mitch. Because we were told he had only “days” - we chose not to tell him right away. Mitchell’s nature was to worry and we knew him well enough to know this would consume him and ruin what precious time he had. We wanted him to be a little boy as long as possible. For soon, life would require him to grow up much too fast.
So we carried in our hearts the heaviest of secrets to spare our son unnecessary hardship. We helped him have an early birthday party, a handful of Nerf gun wars, video games, movies, and all the kisses and cuddles he could ever want. He was able to leave our home for three short trips; one to Olive Garden to eat his favorite “Tour of Italy”, another to Best Buy and finally a trip to Target to buy some toys he had been saving for. All the while, behind the veneer of soft smiles and gentle hand hugs we were living the worst nightmare. Tucked within Mitchell’s bag containing his Milrinone pump was this blue piece of paper signed by two doctors and my wife and I with instructions to not resuscitate him if an event were to happen. The medical committee felt this was the most compassionate means of dealing with our son.
As the end neared, there came a point that we had to tell him.
As Natalie and I sat on his bed, each holding one of his hands, we told him mom and dad couldn't save him. We told our little son he was going to die. Forever etched in my mind were Mitchell’s reassuring words “It’s okay mommy.” It wasn't so much the words he said that brought me to my knees, but the way he said them. Lying on his bed, struggling to breathe and sick beyond repair was a little boy who should have been playing with Legos and video games, watching cartoons and doing everything little boys enjoy. Instead he was contemplating the heaviest of life’s experiences. And that giant of a man, who was clothed in the body of a little boy, set aside his own fears of death and dying to comfort his mom and let him know he was okay. My son … is my hero.
A few minutes later he asked if we could help sit him up. At this moment my little son, who was only 10 years old suddenly became 110. He didn't say much. He just looked out the window with a look of deep contemplation. He had done this before, but this time was different. This time he knew the end was coming. This photo was that very moment, just two days before he passed away. I will never know what thoughts crossed his mind and I wished so badly I could have joined the conversation in his head … to help soothe his troubled mind and worried heart.
I remember praying with all my heart later that evening … pleading that somehow, some way, that God would take me instead. With all that I was, I meant it. I wish I could have fallen on the sword for my son and spared him. There is no bullet, no train, no torture or cosmic calamity that I wouldn't stand in front of to shield my children from harm.
There are moments of truth in our lives that reveal our true character; not the characters we pretend to be to our neighbors and friends – but moments that reveal the true nature of our souls. What we have become.
I’m reminded of the old Chineese proverb “there are no secrets of the soul that conduct does not reveal”. Our little Mitchie, when faced with an implacable, mortal enemy revealed his true nature by setting aside his own feelings to comfort his mother’s broken heart – which was an act of love, compassion, selflessness and charity; of bravery and dignity.
In this moment of truth, my little boy, who was still in elementary school suddenly became a master teacher. I have taken notes and I am doing my homework. Homework of the soul.
I have a box on my shelf that contains precious treasures of my fallen son. Tucked neatly inside are some hand-written letters, drawings of castles and dragons he gave me, his wallet filled with tattered bills he worked so hard to save, a spiral binder with stories he wrote and his financial accounting of the iPod apps he purchased and his goals to save for new ones. This box is also home to the flower I wore at his funeral, a stuffed animal he gave me for Valentines, his favorite soap he was no longer able to smell and wished so badly he could, and other things that remind me of him. That box has precious treasures that I will carry with me until my dying day.
And while I treasure those things deeply, they are not the subject of my affections but merely symbols of them. They point to a little soul that I was blessed to raise for a season. Someone who I miss with all my heart and would give anything to see again.
Before Mitchell passed away he wrote on a piece of paper “Dad is the best”. When he handed it to me my knees buckled because I knew I was riddled with weakness; I recognized there are a million-and-one ways I can be a better father … could have been a better father. I wanted to be the best for him but in my mind I knew I fell short – no matter how hard I tried. But to his innocent eyes I was the best. And while unworthy of that I was also grateful that he could look past my weaknesses and see into the desires of my heart.
A few days before he passed away, as Mitchell started to slip away, I sat at his side and held his hand and kissed him with all the love I had. Even though he was slipping in and out of consciousness I wanted him to know during his waking moments that he wasn't alone and that his mom and dad loved him. While deeply flawed as a father, I loved him the best I knew how and wished so badly to trade places with him.
When I look upon this box of Mitchell’s treasures I know that my real treasures aren't made of wood or stone but live inside flesh and bone. I treasure my children above all things. I live for my wife and remaining 3 children ... but am dying inside for the one I lost. The work required to mend a broken heart while trying to be a functional parent and husband is a tenuous balancing act to be sure. Some days I’m a jellyfish.
As Father’s Day approaches I find myself reflecting on what it means to be a parent … what it means to be a father. I learned long ago that I have a Father who is the parent of my soul. This isn't fiction or an imaginary means of support; He is as real as anything I know. I know this because I have paid the price to know it. And that is the promise to all of us … that we can know of ourselves. I can think of no better example of perfect parenthood. To study Him is to study what it means to be a parent, to be a child, and to understand the purpose of this life.
If it is true that we become what we’re labeled, my son’s label of me before he passed away has been indelibly etched in my mind and heart. Not because I believe it, but because I aspire to live worthy of that label. I have many miles to go … with broken legs and a wounded heart I limp forward to that place beyond the hills. That place where I can fall upon him once again and kiss his hands and face and tell him that being his father was an honor and a privilege; to thank him for teaching me about the deeper meaning of life and love. To thank him for teaching me what it means to be a father.
Natalie and I took our kids to the park last November to enjoy one of the last mild evenings before winter took hold of the sky. Change was in the air and we could feel it in our bones. We both had a sense that more than the season was about to change but we didn’t know exactly what or how … if only we knew how much things would change. If only …
But there was a quiet whisper tugging at our souls. It wasn’t obvious to us at the time, but looking back we can see it clearly now. We weren’t alone.
It was on this evening Mitchell sat on the edge of a skate park and watched other young kids do everything he longed so much to do. He commented how much he wished he could be like regular kids and do the things they do. Even though I wished the same for him, I loved him any way I could have him … he was awesome just the way he was.
In an effort to lift Mitchell’s spirits, Natalie pushed him in his wheelchair across the grassy field to play tag with his siblings. Together, Mitch and his mother chased our kids as they ran from him. Mitch laughed and laughed. For a moment he forgot about a world that seemed to always leave him behind, the world was his. And for a moment my wife and I forgot about a world that was collapsing in on him. Everything about this moment was a gift. It was a perfect moment ... a moment that mattered.
Last month I printed this photo on canvas. It now hangs in my office as a reminder that beyond the hills is a place I cannot see … a place that my little boy waits for me.
I run to him.