Several years ago I introduced a concept to my mother called ‘Cousins Camp’. I had recently discovered it through a client of mine who also had a large family and I thought we could benefit from following their example. In essence, it’s a 3-4 day family retreat where all of the cousins get together and participate in a variety of family & team-building activities. The responsibility to run the program rotates each year among the mothers so everyone gets a chance to lead. For many years now Cousins Camp has become a family staple and something the cousins/grandchildren look forward to each summer.
A few summers ago, during our annual Cousins Camp, a small structure had been built near a small grove of trees at our family ranch. While concrete was being poured around the foundation my mother had arranged for each of the grandchildren to leave their hand print as the concrete was setting. Mitch, while eternally shy and quiet, was excited to participate. He had no idea at the time how precious his contribution would soon become to his mother and father.
Fast-forward to the summer of 2013 when I visited my mother’s ranch and stumbled across Mitchell’s hand print. I had all but forgotten about it. But there it was, covered in leaves like a secret nature was trying to keep ... obscured by the shifting shadow of the trees. Upon seeing it I fell to my knees and immediately sobbed. I couldn't believe how small and sweet his hand was and how I wished to hold it so. Within eye-shot of my son’s hand print was the tree-fort bridge he so bravely crossed when he was an even younger boy. Suddenly I was haunted by days gone by and longed for the warmth and comfort of yesteryear.
As I sat on the dirt trying to collect myself I couldn't help but think that 20 years from now that very bridge where Mitch showed such bravery will have weathered and decayed and all the cousins, who are children now, will have families of their own. The echo of days gone by will become fainter, and eventually silent. Their children, like all children, will look to the hope and promise of tomorrow – giving little thought to those who came before them.
We may not remember the details of days gone by, but the effects of those moments, good or bad, will long outlast their memory. Watching my own children grow, and die, has been cause for serious reflection. Whether we place our hands in setting concrete or find our hands in each other’s lives, we are shaping each other … and ourselves … and leaving a lasting impression.
My little son’s hands have painfully shaped me. Now, as I look to my own hands, I promise to use them to bind wounds and never be the cause of them; to use them to build and not destroy, to love and not hate.
That little hand print hidden in the shadow of the woods, from a boy who was as sweet and shy as he was broken, has left more than an impression in concrete. And I vow to never allow the passage of time or easier paths to undo the lessons he taught me at so high a price.
Just a few days before Thanksgiving we were told Mitch was denied a heart transplant because of his underlying diagnosis of DMD. We were told our son would potentially die in a few months and most certainly within a few years. Later that night I put this video together journaling what happened on this difficult day: https://vimeo.com/54167124.
Natalie and I left the hospital scared and overcome with a kind of darkness one rarely encounters in life. We found ourselves at once empty hearted and smothered in sorrow. Everything seemed strange to us. Nothing felt real. The hospital’s hallway felt so very long as we pushed our son in his wheelchair toward the exit. By the time we got to our car our minds were fixated on the biological grenade in our son’s chest. We had come to the horrifying realization the pin had been pulled and there was no way of knowing how and when the calamity would strike.
We swallowed the massive lump in our throats, dried our eyes and did our best to table our emotions. Sweet Mitch didn't know what was happening – and there was no point in telling him at the time. He was so young and to lay such heavy things on his shoulders would have only terrified him – and that would have been cruel.
It was our tradition to take Mitch to lunch after our cardiology visits. He loved Panda Express and that is where we went this day. His fortune, as fate would have it, read: “Your courage will reward you.” I remember posting that fortune on Instagram as well as this Facebook Page. A foreshadow of things to come.
After lunch I remember watching in awe two of my greatest heroes: a broken mother and an even more broken son. I remember trying to catch my breath and hold back my tears as I saw Natalie carry our boy with a smile, hiding her broken heart so as not to frighten him. Natalie was [and remains] eternally selfless and endlessly loving. She has never carried her burdens with a grudge – no matter how heavy or painful. And though her heart was heavy this day, and every day thereafter, she looked for every opportunity to make our son’s burdens light. To this day, she continues to look for ways to make the burdens of others light. I love and admire her.
Our son reminded us that burdens can be blessings. Even though my son’s disability carried with it the burden of care and inconvenience, it has been a profound blessing to have him in our lives. It is something of a heavenly paradox to witness … how the things that weigh us down make us stronger.
So we may become strong ... that is why burdens can be blessings.
Mitchell’s final days were so very hard. We had just learned excessive sleeping was a sign that death was near, and he began to sleep more and more. Perhaps what makes my son’s passing additionally hard for me is there was no formal goodbye. It wasn't like he was boarding an airplane, or car, or a boat – as if to go on a long journey. There was no clear demarcation where I could give him a hug and look him in the eye and say “This is it, son. Oh, how I love you. Thank you for being such a good boy and I am so proud of you. I’ll see you soon.” He was awake and talking one moment, then he just drifted back to sleep and never woke up. By the time we realized what was happening, it was too late, and he was unable to open his eyes or talk. I know he heard us the night he passed because he could squeeze our hands in answer to our questions. And that night we did tell him we loved with all of our hearts as we wet his hands and face with our tears. But my heart and soul wanted more.
For reasons I do not understand, this was my son’s journey and I wish with all of my heart I could have taken that journey for him. But such a path was not part of God’s plan for my son or my family. My son’s death has taken my own heart, a heart that already cried at commercials or subtle acts of kindness, down a path that has caused it to be tenderer, still. My broken boy broke me. But I am putting myself back together once piece at a time.
A colleague said to me recently “There are two types of people in this world: those who admit to being broken, and those who don’t.” A poignant reminder that we are all mortal and there are always broken things to mend.
When it comes to the death of my father or my son’s disability and death, I have never experienced anger. I’m told anger is a necessary part of the grief cycle – but I feel no anger. At least for me, I have accepted those hardships as something from which I am meant to learn. What’s more, what does anger toward God profit a man? I have seen what the fire of anger can do to one’s self and to others; it consumes and destroys. Water, on the other hand, renews and gives life.
So while my soul trembles with grief and sorrow, I don’t shake my fists at God; angry at the burden we must bear. Instead, I kneel before Him and ask for mercy as I stumble to learn what I must. And while I weep because I miss my son terribly, my heart is also glad that I was blessed to be his father. Some of the greatest blessings come at the greatest price.
As often as possible I will trade fire for water; anger for tears.
Rather than scorching the soil of my soul, I will water it with my tears and hope to grow.
I think it's safe to say that 1 out of every 10 thoughts is not about my son.
I have been to many funerals in my life; my father passed away when I was 18. That was hard. Since then I have experienced all manner of loss – but I have never known a sorrow such as this. And as much as I would love to take one, there are no shortcuts.
I once wrote in my journal: “I’m not sure which is heavier: all the granite on earth … or grief.” I can say with confidence that it isn't granite.
Our hospice nurse, who is no stranger to loss, encouraged us to allow grief to take its course – all the way to rock bottom – and from there we could begin to rebuild our lives. I don’t know where “rock bottom” is or what it feels like. I only know that I’m still falling down the rabbit hole of grief. I’m not spiraling out of control, but I can tell the bottom is still a great distance below. And sometimes, when I least expect it, it is difficult to keep my breath.
The day Mitchell’s headstone arrived was surreal; I remember taking my wife to see it that evening where we learned a new definition for sober. I remember how hard it was to breathe that day – my chest and lungs exhausted from weeping. Every time I entered the cemetery tears would invariably flow. Like a teething baby, the front of my shirt would be drenched with tears.
I can go to the cemetery now without crying – at least not the entire time.
This summer has been a blessing for me, personally. With my kids at various summer camps, etc. circumstances were such that I could spend many evenings by my son – even if only for a moment. I knew he wasn't there -- but I so wanted him to be. And while I sat by my son’s remains, I was able to reflect and sort out many thoughts and feelings and write about them. The cemetery became something of a second home to me. The grass a warm carpet and the atmosphere, comforting walls of serenity. When I look back on my summer months trying to process my own grief, I have good memories. Healing memories.
Things are changing now. As fall inches toward winter each day the grass seems to grip the cold and hold it like a grudge … a whisper of colder air to come. And, for a season, I will miss those warm evenings by my son.
When I leave the cemetery I invariably look through my rear-view mirror to see my son’s headstone before I drive away. In like manner, I have found myself looking through the rear-view mirror of my own life. I look back not to dwell on hard things and sadness but to learn from my own experiences and hopefully become equipped to make better decisions in the future.
I have heard it said so many times before that “no parent should bury their child” … but that kind of reflection does nothing for me, or anyone. Life shows us in painful abundance that hard things happen … and sometimes we must bury our children. I would give anything to have my baby back – but I cannot. And wishing won’t make it so. So, rather than focusing on what “shouldn't happen” or the apparent unfairness of it all, I find myself looking through the rear-view mirror and then to the future … trying to learn from this incredible hardship.
As I tumble down the rabbit hole of grief I anxiously await rock bottom. And on my way to that unfamiliar place I am healing a little and hopefully that healing will give me the strength to break my fall and lessen the impact.