When night came my wife and I would try to get a little rest in a small corner of the CICU room. On a bench barely made for one, we somehow managed to share it and lay our weary heads together hoping to find energy to fight another day.
This was what I saw each night from my pillow. The florescent lights from outside shone through the glass doors and paper-thin curtains like the punishing noon sun – as if to taunt my fatigue. On top of that, alarms were constantly sounding alerting nurses of the disaster that was unfolding in my son’s body.
Unable to find rest, I would often sit in a chair beside Mitch and hold his tender hand while he slept. Quietly I wept. As I've noted in earlier posts, his heart was pounding so violently it seemed as though a grown man were in his chest trying to punch his way out. I thought to myself, “How could this be? Here is a little boy who has a mind to hurt no one – but is being mortally wounded by an invisible enemy. How could this be?” There are answers – but often, in our sorrows, they are not as forthcoming.
It was hard to find rest at the hospital because everything reminded me of the violent battle that was taking place under the surface of my son’s skin. While doctors were doing all they could to keep death at bay just a little longer, everything reminded me Mitch wasn't on borrowed time, but at the end of time. Each night I would sit by my tender son and weep a little more than the night before. Each night I found myself more weary and very much in need of rest.
Finally, after having exhausted every medical avenue we knew at the time, we were home. No longer smothered by the constant reminders my son was dying … no more alarms, no more displays showing his schizophrenic heart rate … we were home and focusing on the other heart, the one that loved. At least at this moment I understood how ignorance could indeed be bliss. We did exactly as the cardiologist suggested as he choked back his own tears, “Take him home and love him with everything you've got.”
While travelling through the wilderness of grief I have discovered sleep a strange bedfellow. On days the gravity of grief is particularly heavy, sleep is a welcomed break from the sorrows of the world. Sometimes night can’t come fast enough – for I know I will find rest.
Yet there is a place that terrifies me … it is the transition on either side of sleep. Most nights [or mornings] I consider myself lucky if I slip from one state to the other quickly. But if I spend any time at all in that place of transition, somewhere between sleep and consciousness, I experience the horror of losing my son as though it just happened. Those moments are terrifying beyond description. They break my already broken heart, all over again. I wish these moments didn't happen. But they do. And I cry out to my Father, that my weary soul might find rest. I don’t know if those streaks of panic and horror will ever stop. I pray they do.
But if not, I will bear that burden with a glad heart. For I know in my sorrows I am learning; and though my hands tremble and soul shakes, I will take these lessons patiently.
One day I will see my deepest sorrows transformed into the sweetest glee.
When my kids were especially little I started a game called “Gut Busters” – which was basically human bumper cars. The title of this game became something of a metaphor for the participant and observer – whether through smashing or laughing, it was a gut-busting experience. This idea isn't new – but to my kids it was –and that was all that really mattered. We would stuff pillows from the couch in their pajamas and they would run into each other and fall to the floor. Everyone would giggle and laugh and it was a great way to get their wiggles out before they went to sleep.
It was the evening of my birthday (2007) when these sweet boys wanted to have an honorary smash-up-derby. I’ll never forget how much Wyatt looked like SpongeBob, how energetically Ethan flexed his little chicken wings, and how precious Mitch, who always felt physically awkward, pointed his finger in the air meaning to do a thumbs up. Mitch wanted to be strong and powerful like his brothers – but in the end, his life traded physical power for a power of a different kind.
A few weeks prior to this moment with my boys, I stumbled into something songwriter Guy Lombardo said, “Enjoy yourself. It’s later than you think.” For some reason, that quote pressed against me like a cold breeze and I couldn't shake the feeling the hour was later than I knew. Yet, there was no indication Mitch was in any trouble of any kind. For my son death would surely visit – but it wasn't supposed to happen for another 20 years. It would only be 5 years from this photo before we would learn Mitchell’s heart was beginning to fail. Less than 6 years before the end.
Not knowing the perils ahead, we took heed to those quiet whispers that told us the hour was later than we knew. Though my heart cries out today over the death of my son and I am very much pained therewith, I am grateful we responded to those whispers and drank in the moments the best we knew how.
Do I have regrets for time poorly spent? Absolutely. But mistakes are part of our human experience. I carry regret the same way I might walk away from a conversation saying to myself, palm to forehead, “Oh, I should have thought to say ____.” I don’t carry regret as a burden or an instrument to lash self-punishment. Rather, my regrets serve as a reminder to do better next time.
Were I to live out my days in regret for the things I could have (or should have) done better, I would not have the presence of mind to enjoy life. Though I carry the weight of grief and sorrow over the loss of my son, a weight so heavy I can scarcely shoulder, I have 3 other children whom I love just as much. And I will enjoy my time with them while they are with me. Because, even still, the hour is later than I think.
It was the end of a long day at Universal Studios in Florida. We were about half-way into Mitchell’s Make-A-Wish trip and he was having the time of his life – and so were we. Attached to my camera pack was a carabiner that tethered gifts and other souvenirs we picked up here and there – but that wasn't the real gift I carried this day. The greatest gift was my family – and that wasn't lost on me … not for a second.
As we made our way out of the park Mitch drove his scooter near me, like he always did, and reached up to hold my hand. I loved holding his hand and I yearn to do it again today.
I always dreamed of being a father. I loved my kids long before I ever laid eyes on them. As a young man I used to wonder what they would look like, the conversations we might have and the adventures we would enjoy together. While other boys were catching frogs or setting fire to empty fields, I dreamed of being a dad. Oh, I've had my share of youthful shenanigans and misadventures. I've even caught a few frogs and set a few fires. But my heart always wondered what fatherhood would be like.
I remember early in my professional career overhearing some of my older colleagues talk to their kids on the phone. I was young and single and would act like I wasn't paying attention but I was listening and I wondered what it would be like to have little kids of my own. While not an envious man, I was sometimes sorely tempted when I saw others with children. I was so excited to have kids of my own.
Twenty years later I have found my wish granted beyond my wildest dreams. Although my cup is cracked and tattered by grief and sorrow, it is overflowing with love and gratitude.
There’s a saying: “The greatest gift you can give someone is your time. Because when you give your time, you are giving a portion of your life that you’ll never get back.” I’m not always the best at this. But I try. And when I fail, I try harder the next time.
I don’t know a lot of things. But one thing I do know is when I am old and dying I won’t be reaching to hold on to car keys, fancy things or any thing. Instead I’ll be reaching to hold the ones I love. For they are my real treasures - and that won’t be lost on me. Not then. Not now. Not for a second.
About 14 years ago I started a storytelling tradition with my kids that would only require music and one’s imagination and then the universe was at our fingertips.
On my iPod are playlists that contain all manner of movie & video game scores in random order, across every genre. Often, after their teeth were brushed and my kids were tucked snugly in bed, I would turn on a playlist and narrate random stories out of thin air – and my kids were the heroes. Because the music would shape the narrative, none of us knew where we were going. Each night was an untold adventure waiting to be explored and as lights dimmed and the music began to play my children and I would be swept far away in story. Suddenly the bedroom walls crumbled to the floor and the ceiling unzipped and they saw a night sky with strange planets, or suddenly they were crossing a vast field of grass on a journey surrounded by storms that were closing in, or they were atop a glass-covered skyscraper in a mega-city about to launch their jet-pack. Wherever we went it was magical and unexpected.
Before long this practice no longer soothed my kids to sleep but excited them – instead of getting tired they would sit on the edge of their mattress, with hearts pounding, wondering what was next. Sometimes they would argue “No I want to be that guy!” It wasn't long before they began making plot requests and wanted to help shape the story.
These journeys of the mind are always fun. So much so, I even do this with my employees when we are driving long distances. Each of them take a turn telling a story on the fly in response to a song. They don’t get to practice or rehearse, they only respond to the music in real-time – and as the tempo changes, so must the story. Suddenly 100 miles feels like 5 minutes and that we've read 300 fascinating books in the blink of an eye.
I loved this tradition with my kids. I don’t do it as often as I used to. I tried it again with Ethan about 3 weeks ago. We were driving home from his lacrosse practice and I told him a story against the backdrop of song. He was quiet and inside I wondered if he thought I was being an absolute geek. At the end he looked at me, paused and said, “Dad, that was awesome.”
On the night of this photo Natalie and I had just tucked Mitch in. Faithful Marlie snuggled near his feet and he was set. Then he asked me in a soft voice, “Dad, will you tell me a story?” My eyes instantly filled with tears and my throat swelled. “I would love to tell you a story, Mitch.”
I ran to the next room to get a speaker and iPod and for the next 10 minutes Mitch and I went on adventure together. Once again, the ceiling and walls fell away and we were transported to a magical place. We started in an ancient forest where the trees could whisper secrets of a time long gone; we could see the night sky and a fabled moon that was only visible through the forest trees. We traveled vast distances together and Mitch was the hero. All along I kept thinking how in real life this little boy was an even greater hero to me. In life, Mitch couldn't jump great distances nor did he wield physical strength like he did in my stories, but in every way that mattered he was stronger and nobler than the sum total of every character I could imagine.
As my story concluded I knelt by Mitchell and told him, “Son, even though you were the hero in this story, you are my real-life hero, too. You are the most amazing young boy, Mitch. I love you.” He asked why I was crying and I told him it was because sometimes parents have so much love in their hearts for their children they don’t know how to express it, and they cry. I told Mitch that was the magic of being a parent: you create the most amazing miracle of life and watch it grow, develop and become. Parents cry because they love; and love is the most magical power on earth. Love heals and protects, it renews and forgives, it lifts and defends … love gives meaning to life. To know love is to know God.
This was the last story I told Mitch. Not many days would pass before everything in our world began to unravel and we would experience the most sorrowful story of all. A story that would break my heart. Forever.
I have traveled the universe and back with my children and we have visited every age we could imagine, even the age before time. I have discovered parenthood is the greatest adventure of all. It’s a story that needs no soundtrack to be told; a story that frightens and enlightens us … and a story of love and service that never gets old.
I pray that at the end of my days, when my story is ended and I take that final journey to that place beyond the hills, that my son will be the first person I see. And I will run to him and give him a father's embrace. For I love him. I miss his kind soul, I long to see his sweet face.