When my wife and I learned we were expecting our first child I remember being excited at first, then shocked and terrified. In my mind and heart I thought “I’m just a boy myself … how can I possibly be qualified to raise a child?” I was sober and shaken. Having come from a large family, I always wanted children of my own – but I was in my early 20’s and wasn't sure I was mature enough to take on the most important job I will ever have in this life: to raise a child.
But that fear only lasted about 5 minutes. Maybe 15.
With each child in the delivery room I became more emotional because I knew that tiny baby swaddled in cloth, eyes barely open and breathing for the first time, would teach me about love and sacrifice and what it means to be a father and a child. By the time we had our youngest son, Wyatt, I wept in the delivery room because I knew what I was in for … and my heart was overflowing with love, gratitude and anticipation.
This Thanksgiving our kitchen table will have one less person seated there. Mitch always wanted to sit by me, and I always wanted to sit by him. He always reached over to hold my hand while we ate and that melted my heart. His absence will be profoundly felt. I know I will smile … and I know I will cry. But most of all, I will be grateful. I will thank my God for all that I once had, all that I still have, and all that I will yet have.
This image is so special to me because it is the second-to-last family portrait we have. The last was taken just before Mitch passed away; and that photo is even more sacred. Though both images tug tenderly at my broken heart, they remind me I have much to be thankful for. They remind me of life’s greatest treasure.
And one day, when I see my son again, my gratitude will be so great there won’t be room enough in the universe to contain it.
November was upon us and the last of the leaves were about to fall. We made haste and took our kids to the park to play before the wind and snow swept it all away. Our kids thrashed about in piles of crispy leaves, and like playing in a ball pit, they enjoyed making a mess where none could be made. I remember this day so well. I was in Camelot and life couldn't have been more perfect. I can almost smell the sweet, earthy air … and if I listen closely I can almost hear the laughter of my children today.
I stumbled across this photo recently and my heart skipped because it seemed symbolic of my son’s approach to life. It also reminded me of what it means to be grateful.
Because of his growing muscle weakness doing big things was difficult for Mitch, so he learned to take great pleasure in little things. At the time his back muscles were becoming so weak that bending over was very difficult for him, and on some days nearly impossible. Sensing he was having trouble, Laura-Ashley and Ethan quickly gathered up some leaves and placed them in his hands and Mitch would throw them in the air and say “weeee!” I remember feelings of warmth wash over me as I saw my children serve their little brother. Something so simple. Something so beautiful.
Mitch was always grateful for the little things and I believe that was the key to his happiness.
Roman philosopher Cicero wrote “Gratitude is not only the greatest of virtues, but the parent of all others.” I have found that those who are most unhappy in life seem to be the ones who feel entitled to more than they have. I am reminded of a saying I heard years ago “you’ve heard of the man who cried and cried because he had no shoes, until he saw the man who had no feet.” If our blessings are relative, so gratitude should be.
I lost one son to Duchenne Muscular Dystrophy – and it nearly destroyed me. Almost daily I have a moment of horror where the reality of my son’s death knocks the wind out of me. I cry every day for him. But I know families who have lost two boys to DMD. Still, I know others who have lost (or will yet lose) every single child they have to DMD. I cannot imagine what it would be like to endure such compound losses. Suddenly, when I consider the harsh realities others must bear, I feel like the man who cried because he had no shoes.
When I think back on this moment with my children I am reminded of Mitchell’s gratitude for the simplest of things. I am reminded that my children took me to a special place … a place of goodness and beauty … a place that cannot be purchased with money or won with things ... they took me to Camelot.
They taught me that Camelot is a state of mind and condition of the heart that is borne of gratitude. And I have found that when I am grateful, suddenly I find light where there appears to be none. Beauty where there is desolation. Happiness where there is sorrow.
This Thanksgiving, and every day hereafter, I shall ever be in search of Camelot. Even though I may be buffeted by sorrow and difficulties unknown, and my heart bruised and tender to the touch, I will follow Mitchell’s example and fill my heart with gratitude.
Then, suddenly, I will see that Camelot is all around me.
Natalie and I left Mitchell’s room as he drifted to sleep. Mitchell was slipping away. Everything was escalating and we knew time was running out. We both sat in the hall just outside his room and wept. Our tears came from a well of the deepest sorrows. I eventually looked to my weary wife … exhausted, frightened and heavy with grief. My heart broke even more because I knew this woman, who has the tenderest of hearts, loved her little boy in ways only a mother can know. The “fix it” father in me desperately wanted to make it all go away, but I could not.
“Over the years I have come to understand that mortality, our life on earth, is a schooling the soul. It is an education that takes a lifetime to complete. There are books to study, things we must do, knowledge and faith we must acquire … and there are tests. Oh, there are tests. ”
There were many occasions that I prayed to God “Please, no.” I petitioned over and over that somehow … some way … my son would be spared. Yet, every medical intervention was riddled with peril. Too much was happening, too late. Every path was a dark path. Even still our prayers continued, “Please, no.”
At some point during my wrestle of the soul I received a distinct impression. After I had cried out what felt a million-and-one times “please no” I was finally answered with “please know”. What followed was a most unique spiritual experience. A peace and understanding had fallen upon my wife and me; and while we didn't have words to describe what we were feeling, we had a strong sense that we were being told “Please know, everything is as it’s meant to be. I've got this.”
Over the years I have come to understand that mortality, our life on earth, is a schooling the soul. It is an education that takes a lifetime to complete. There are books to study, things we must do, knowledge and faith we must acquire … and there are tests. Oh, there are tests.
There are tests of prosperity; what we do when the sun is shining and our pockets full or overflowing. There are tests of faith; what we do when the lights go out. Test of hardship; how we respond to our difficulties. Test of anonymity; what we do when nobody is watching. So many experiences we encounter … so many learnings, if we become students of the soul.
When I consider this hardship I pray that the child in my heart can rise above this profound sorrow. I know I can. And I will. But losing my son has broken every bone in my body, wrenched my soul and pulverized my heart. With all that I understand and have felt spiritually my heart still cries out for my son and I miss him terribly.
This hardship has taught me, however, that while I may plea to God “please no” … if the answer is no, I must change my plea to “please help me know.” That is the foundation upon which we grow.
Natalie carefully helped young Mitch to the examination table for a routine cardiology exam. Mitch smiled at his mom as she gently lifted his hand and kissed it and then told our son how much she loved him. Little Mitch gave her a hand-hug and my heart was overflowing. Suddenly I lost my breath as the thought occurred to me: “This is my Everest.”
Life has so many mountains to climb. I would rather traverse the valleys and rolling hills with the summer breeze at my back. I would take up my abode by the gentle stream and beautiful lake and look upon Everest like a painting, admiring its majesty from the comfort of my rocking chair. But such was not my lot.
This was the day we learned Mitch had cardiomyopathy; that DMD had prematurely destroyed his heart and his life was in jeopardy. Over the next 9 months, each checkup revealing things were getting worse, I found myself no longer looking at Everest, but scaling it.
I can see the summit far in the distance. Basecamp, I can scarcely see below. The air is thin and bitter cold as storms circle about. This Everest is bewildering and its difficulty is matched only by its majesty. Many people don’t reach the summit; they retreat, lose their way or find easier paths that lead to lesser summits. Some never come back.
While this hardship is daunting and I often worry I’m not prepared for such a journey, I have developed a spiritual connection with this Everest. I have learned it is not my enemy, but my teacher. It is merely an obstacle I must climb in order that I might grow.
And on that fateful day when I reach the summit, where the air is thinnest and the stars barely out of reach, I know I will see far into the horizon … things that cannot be seen in valleys, or by gentle streams.