The morning after Mitchell was released from the hospital he wanted to play Minecraft. His hands, finally free of bandages, medical tape and IVs were able to do the things he loved. It felt like a dream state … my sweet son was home. My cup was full, and running over.
Eager to spend every waking moment with Mitch I sat with him and his friend Luke while the three of us, on separate computers, began to play in his digital sandbox.
Within about 20 minutes Mitch had carved out a fascinating labyrinth of halls, rooms and secret passages nestled deep in a mountainside. He had Luke and me building out rooms deep beneath the surface of the earth. I wanted to do a good job for him so I carefully carved out a mansion … I laid carpet, installed an indoor swimming pool, hung lights and more. I wanted to make a digital fort for my son that would be the dream of any boy. After a while I realized Mitch and Luke were no longer near me and for a moment I felt like a child accidentally left behind at the mall. The boy in me panicked because I wanted to be near my loved one. I searched for Mitch and couldn't find him and then realized he had gone to the surface with Luke to build something interesting.
I took a photo the moment I discovered what he had done.
Mitch and his friend created a large waterside that went down the side of a mountain (see left image). He then placed a raft at the top and rode down the artificial river as if it were a theme park attraction. Each time he would say aloud “Weeeeeeeee!” Mitchell had so much fun. I had even more fun watching him. My heart was full.
This was the last time Mitch played Minecraft on a computer. The rest of his gaming adventures would happen on an X-Box or his iPod. We were grateful that Mitch was able to play video games until the end. These games played a vital role in keeping his mind active, filled occasional voids and offered moments of escape while his body progressively shut down.
Today I roam his carefully crafted landscapes as if they were ancient Aztec ruins. I see the castles and fortresses he built with great care – each an expression of his creativity and mindset. It is haunting on some level because I often expect to see his avatar appear, like it did when we played together. But he is not there and never will be – at least the way he used to be.
These vast digital landscapes that contain my son’s creations are like modern-day archaeological finds. I have scarcely scratched the surface. There are courtyards, forts, secret caves, cities in the trees my son has created that have yet to be explored. Like an archaeologist that studies ancient ruins … searching for clues of a people long gone, I will search these maps out and discover breadcrumbs my son left behind. And I will wonder.
Technology presents a new and complex dimension to mourning. There are more than drawers, backpacks and closets to explore; there are now enormous digital places that consume no physical space. And unless we look carefully we may miss out on the digital breadcrumbs our loved ones leave behind.
Over the last few years my business partner (who has since become one of my best friends) and I would occasionally take our kids camping. Each location was radically different from one another – which made every excursion an uncharted adventure. From winter camping high in the mountains to settling deep in a canyon, our kids have experienced various types and places.
On one occasion I remember taking our kids to the west desert. The ground was barren and dry, almost post-apocalyptic. Aside from a highway far in the distance, almost completely out of view, there was nothing but the desert. Night was fast approaching as we started a campfire and noticed thunderstorms far in the horizon that almost completely surrounded us. The contrast in light and color was mesmerizing - with the clear sky above and the deep, shadow-filled blues in the distance. As the sun set Mitch and I sat in a chair and watched towering mountains of cloud explode with light. It was magical. I have photos of that trip and will post them some day.
On another occasion [as seen in this photo] we took our kids high into the Uinta mountain range. Clay (my friend) was also a scout leader and helped our boys fulfill some requirements for a merit badge. The trip was a triple-win.
There wasn't a cloud in sight and because we were far from city lights we could see far into the heavens at night. I loved camping with my little boys because it was just one more occasion to cuddle with all of them. Each time we went camping Mitch and I would whisper to each other as we gazed through the tent into the stars – and this trip was no exception.
The next morning we cleaned up camp and packed our cars when Clay suggested we play a game. The objective of this game was to line the kids up and have one child whose back was turned to everyone. While his/her back is turned the kids run toward the person (in this photo Mitch is the one whose back is turned). If he/she turns and sees someone moving, that person goes back to where they started. It’s terribly fun.
Each child took a turn and it was so rewarding to see them laugh and have fun together. When it was Mitchell’s turn I remember seeing this shy, quiet boy smile. I will never forget the look on his face. He belonged … and he loved it. This experience, this look on my son’s face has never been far from my mind and it has brought me so much happiness.
Belonging, when he felt so apart from everything, meant so much to my son. And because it meant so much to him, it meant just as much to me. To see Mitchie visibly happy, to feel like he belonged … my heart leapt for joy this day. And it leaps again today.
As a very young boy I remember hearing my parents tell me they were happiest when they saw me well and happy … when they saw me learn and grow. I often scratched my head in confusion – sometimes I wondered if they were on drugs. But I have come to learn my parents weren't crazy and the only drug they knew was love.
Being a father has taught me where my greatest joys are found … and they aren't found on the internet or in a store or a flashy box or sitting in a showroom for all to see. Real joy comes from those invisible moments [like this moment captured on camera] and those investments in time and attention with my family. Short of my relationship with God, I have known no greater joy. While my heart cries out with sorrow, it also shouts with happiness.
When I consider myself, a deeply flawed, imperfect father who stumbles again and again … yet I can find so much joy in the happiness in my children … how much more might our Father, who is perfect in every way, find joy in us, His children? Could it be that His happiness, too, is in seeing his Children well and growing? Indeed.
Suddenly, the great plan of happiness becomes a little clearer and a lot more personal.
It was a year ago this very evening (almost to the hour) I received a call from Mitch who was in bed for the night. I was in my basement office when he called from the home phone to tell me his heart felt strange. Immediately I dropped what I was doing and ran to my son. When I first laid eyes on him I saw nothingness in his face. Upon seeing him I quickly scooped him in my arms as he came to. I remember thinking to myself, “[Please] … not like this. I’m not done with you, little buddy.” It was then that I felt the heavy, cold breeze from the abyss that was inching to devour my son. I could almost feel the ground from under him crumbling and it was then I sensed the true depths and darkness that was lapping at my son’s feet. Death was coming and I didn't know how to stop it. Within a week I would come to realize that death wasn't at our door but in our home lying in wait.
I stayed with Mitch a while to reassure him and to let him know I loved him. I tucked him in nice and snug, kissed his face and took this photo of his sweet smile. We talked about his Minecraft base and other things on his mind. He knew I was recording our conversation and he gave me a sneaky smile. He was as perceptive as he was innocent and sweet. I knelt by his bed and ran my fingers through his hair and said, “Son, people spend their lives in search of treasures. They go to the ends of the earth; they sometimes kill each other or themselves in search of it. They drain oceans and level forests in search of treasures … treasures that don’t last. But I have the world’s greatest treasure … and that is my family. You, son, are one of my greatest treasures. I want you to know how much I love and treasure you.” He smiled and snuggled his head deep in his pillow and drifted to sleep. I miss him.
Once Mitch was sleeping I went to the kitchen and wrote what happened in his event log. A few months prior we started documenting events and irregularities in search of patterns - there were none. In fact, nothing like that had happened before and I didn't know what to make of it. I didn't realize this small tremor was a prelude to a biological earthquake that would strike a week later and send my son into a death-spiral of end-stage heart failure.
The original post of this event can be found here: https://www.facebook.com/photo.php?fbid=612458198783845&set=pb.192859897410346.-2207520000.1390160799.&type=3&theater
Until this night I didn't recognize this was the beginning of the end. I just did what I always did … I looked him in the eye and told him I loved him. Never a day passed that I didn't tell my kids how important they were to me. … how important they are to me. We spend our lives making sure they’re bathed, fed, clothed and on top of their homework … but I think kids should also be fed with love and clothed with confidence.
Why do we wait for someone to die before we eulogize them? Why do we withhold words of affection, commendation and admiration as if they were scarce commodities? Sometimes, at funerals, the nice things we have to say are said too late. And I get the sense, that for whatever reason, some people die a little inside each day – and a loving observation or a word of encouragement can be just what someone needs to breathe new life into their life. It’s been my experience that as long as I’m truthful and sincere with others, telling them what good I think of them never gets old and is always appreciated.
I said nothing at my son’s funeral that he didn't hear a million times from me. I didn't want him to go a day without a sure knowledge he was loved and treasured. And I hope that whatever thoughts crossed his mind as he was slipping from this world into the next that he knew how much he was loved and treasured by his mom and dad. I hope my son had a sure knowledge I could search the seas, the mountains and trees and never again find a treasure quite like him.
Though I can no longer hold my son, my treasure, as I once did he has made my life richer and more meaningful. Children are treasures that last.
The day was drawing to a close as we left a neighborhood park. We had packed our things and headed home to have an evening BBQ in our back yard. As we started our way up the grassy hill I took this photo of Mitch. To the left of this image (out of view) is a hill with a paved path that is the way home. But to get there Mitch had to drive to the street, turn left, and then backtrack on a different sidewalk to the path that would lead him home. We never left Mitch behind and he was always accompanied by at least one of us. But on this occasion Mitch wanted to jump-start his commute and got ahead of us. My heart went out to my son because even though we were there for him in every way we could think, in many ways he remained alone.
Everywhere we went Mitch had to take the long road. Circumstance often required him to leave the crowd and sometimes go great distances in order to navigate his scooter and go where his friends went. For him the party was always “over there” and sometimes he would miss out because of the time it took to get places. But Mitch always smiled and tried to make the most of what he could do. Yet, deep inside and rarely voiced, he longed to be like other boys and do what they did with ease.
On one occasion, while attending a week-long MDA camp, Mitch saw a young man with DMD on a ventilator and said to his Aunt, “I’m the lucky one.” Sonya, his aunt and second mother, held back her tears knowing the time would come that Mitch, too, would need breathing assistance. The road ahead for Mitch, if left uninterrupted, was longer than he knew. But he was too young to carry a knowledge of such heavy things, so she kissed his forehead with a soft smile and said “I love you.”
“I’m the lucky one” … I suppose in a manner of speaking he was. Luck, after all, is relative. At least for Mitch the world he had grown to love would soon be taken from him piece by agonizing piece. With the passing of each year Mitch was on course to lose muscle strength until he would no longer be able to use his arms, neck, breathe, eat or swallow. This little boy who loved to wrestle, explore the outdoors, dance and use his body to drink life in was soon going to face some horrible, paralyzing realities. And though it pains me to think it, at least for him, perhaps he was the lucky one.
I remember the night I wrote my family about Mitchell’s diagnosis in 2005. He was only three at the time. I described how the road ahead for our son would be long and eventually he would go places we could not follow. Though we would be beside him, kissing him, loving him and cheering him on … the road Mitch was to travel was his, and his alone.
I knew back then I could not trade my muscles for his and give him my strength – though the lion in my soul desperately wanted to. I could not give Mitch my heart so he could live – though the broken daddy in me would have done anything to trade places with him. Like the ticking of a clock that keeps me awake when I desperately seek rest, every beat of my own heart reminds me I could not save him … and that breaks my heart.
When we started out on this journey I thought my son’s road would be longer … and I am pained that it was not. Where Mitchell’s road ended mine continues – and the road before me seems to stretch out as far as my mortal eyes can see. This path, this long road of grief and sorrow is perilous and difficult to navigate; but forward I go. Forward I must.
This experience has taught me in new ways that suffering is singular. Surely there are shared sorrows and there is comfort to be had in mourning with those that mourn … but at the end of the day, we must learn to cope with sorrow, disappointment and hardships on our own. We can help each other along the way, but nobody can do that work for us … and that is the long road, the work we must do alone. But alas, we are never truly alone … there is help from that place beyond the hills … even blessings unseen.
So as I travel the long road of grief I will remember my son’s words “I’m the lucky one” and count myself lucky beyond measure he was my son. And when I encounter others who travel this, or other long roads, I will stop and honor their struggle and I will love them. Perhaps together, for a moment, we can find rest … knowing full-well the road before each of us, however long and hard, will be for the best.