Laura-Ashley really loved little Mitch. She cared for him on a deeply personal level, and Mitch felt it. Mitch really loved her, too. I would often find him hanging out with Laura-Ashley just to talk. She always offered him her time and most importantly her attention. Nothing shows love like caring attention.
I took this photo late March, 2012. Sunday the 25th, to be exact. Winter’s bitter chill was retreating and the first real glimpse of spring had arrived. Natalie and the kids were excited to go outside and get some fresh air, so we went to a small park just down the street.
When I think back on this time in my life, things were especially hectic and my mind was weighed by a million things pulling for my attention. I had just returned from a trip to Honduras and had a lot of catching up to do and I could have told Natalie I was too busy to go with them. I am afraid, as much as I’ve tried to be with my family, I may have said that more than my broken heart wants to admit. Surely it isn't reasonable to be everywhere, all of the time; but if I’m honest with myself, I know I could have done better. I wish I would have done better … and from now on, I will try to do better. Looking back on our lives is always a tricky thing … and it seems everyone’s a genius in retrospect. Hindsight displays everything so clearly: how much time we didn't have, the better path or smarter choices and the times I should have recorded my children’s voices. Like an old film in the attic, I replay my memories, my loves, my joys, my heartaches and regrets. I must be careful to not feed my regrets – for they can devour me if I'm not careful.
I believe regret should hurt just enough so we know not to do [whatever] again; almost like touching a hot stove … heat enough to teach, but not enough to scar or debilitate.
I’m glad I went with my family this day because I was able to take some once-in-a-lifetime photos of our kids playing, Natalie nurturing and Mitch smiling. Had my priorities been on important but lesser things, I would have missed out on life’s most beautiful things. My reward for time well spent are warm memories and photos like this ... which make my heart sing. These two children taught me something about love this day.
Two months from this photo, almost to the day, we would learn Mitchell's heart was broken and he was in trouble. I made this video that very night: vimeo.com/42931543
In less than a year, everything I knew and loved would be turned upside down and my son would pass away. Ask me now the value of this day ...
I wonder how often I have been suckered into believing only the big, rare things are once-in-a-lifetime. Mitch taught me, in the most painful way, every moment of every day is once-in-a-lifetime. I don’t get to go back and do this, or any time over. Time passed is time past. All I have to take with me into the future are the memories I made ... and they can soothe like silk or draw out like the sharpest of blades.
When I see this photo I feel more love than sorrow … and like the hot stove, I hurt for a moment, forever reminded there’s no promise of tomorrow. My wife, children and fallen son are once-in-a-lifetime blessings that I won't squander, not a single one.
Mitch taught me to drink life in like a thirsty traveler: for when the journey’s done, it’s done. And that sounds like once-in-a-lifetime thing, if I ever heard one.
Mitch sat patiently at the examination table for one of his regular check-up’s at Schriner’s Hospital. Dr. Kerr, his Neurologist and DMD specialist, would soon arrive to monitor the progress of his muscle wasting. Mitch didn't seem to mind the wait; he was a good, good boy. Dr. Kerr was one of the great doctors. You see, good doctors treat the body, great doctors treat the person. Dr. Kerr was (and remains) one of the great ones because she always gave a thoughtful dose of personal care. And what a medicine that is. To know that someone cares wields great healing power; it can steady a troubled heart and even help put it back together again. Like epinephrine can boost human performance, genuine care can give an emotional boost that rallies strength to fight on. Care is a most powerful thing. Perhaps, among other reasons, it’s powerful because, anymore, it’s so rare.
Having worked with little boys with DMD, Dr. Kerr knew just how broken our son was. Beneath the surface of his soft smile and tender countenance, Mitchell’s was body breaking down on a cellular level. Whatever muscle strength he knew that day would soon fade away like a cloud on a summer’s day, never to return again. Though he looked healthy, my little son was fatally broken. The irony with my son’s journey was our little boy with the tenderest of hearts would die from heart failure.
As I captured this photo my heart went out to Mitch. I knew a little about the broken road before his feet because I had read some brutally honest books about DMD, what to expect and the catastrophic nature of progressive muscle wasting. Pained by his future, I searched the world over for a detour, a pit stop, or an alternate route. But there are none. There is only one road for these children and that road leads to certain death.
As a father, I have always tried to pave the way for my children’s future. Despite my efforts, which are often clumsy and weak, I have discovered my wife is a superior parent to me and she often charts the better way with my children. I am grateful to learn from her daily. I take mental notes and try to follow her example. She instinctively knows that the better path is often the inconvenient one. I love and honor her for that.
Yet, no matter how diligently we try to chart the course, sometimes the road ahead is broken. Less often, the road ends abruptly and we see, to our horror, our loved ones tumble into the abyss.
Until the end, Mitch seemed almost normal. He was still walking, though his gait was becoming more pronounced and walking distances shorter. He could still use his arms, though he couldn't pour himself a glass of milk, for even a half gallon had become too heavy. Each day for Mitch was a stretch of road. Some days it was clear and paved, other days were met with tremendous obstacles.
The broken road for our little boy was invisible to most. He just faced day, each broken road, with a smile … grateful for life.
If ever I was tempted to complain about the difficult road before us, Mitch constantly reminded me of the saying, “There once was a man who cried because he had no shoes, until he met the man who had no feet.” Mitch was just glad to have a body. I was often brought to tears whenever he said, long before his heart was in trouble, how grateful he was for life. If his life had a mantra, that was it. Though grief, at times, has me wish for death, Mitch taught me to be grateful for life. And while I may be tempted to be like the man who cried because he has no shoes, I love someone deeply who has no feet.
However broken the road may seem, I am grateful to still be traveling, for there are heavenly sights yet to be seen. One day, on the very edge of that place beyond the hills, on the horizon of that place I cannot see ... I will see a form familiar to me. I will run to him with bare and bleeding feet … to that lovely form so familiar, my son I shall meet
It was a cold January afternoon when a kind man walked up our steep driveway with a tattered cardboard box in his arms. Inside that box was a tender, shivering puppy for one sick little boy. Mitch was so excited to have a little furry friend to call his own.
I think on some level Mitch was beginning to feel increasingly lonely because all of his peers were moving far past him. It wasn't that they didn't care about him … to the contrary, his friends loved him. But as they were getting older and physically stronger, Mitch was growing increasingly weak. The world Mitch used to know was beginning to pass him by and he was beginning to feel more and more isolated. He didn't complain about this, but as his father, I knew what was happening. I sensed it as only a parent can.
About a week before my son passed away he lay on the floor in tears saying how much he wished he could do in real life what he was only able to do in video games. He had just played a skateboard game and wanted so much to do those tricks “for real.” My heart broke as I saw my little boy long to be like every other little boy. Life and hardship would take that away from him and that pains my heart.
I don’t know what drove my father-in-law to give little Mitch a puppy, but the timing of that gift was nothing short of miraculous. Two weeks later Mitch would go to the hospital, then be sent home to die. This little puppy was such a comfort to Mitch. I will share more about those tender mercies in future posts, and some are especially tender, but there is no doubt in my mind this little gift was an act of inspired kindness. Heaven’s hand was very much in this gift.
I posted a short video of that sweet exchange here: vimeo.com/58228257
At some point, as Mitch was getting to know his puppy, I turned my camera toward my father-in-law and captured this image. This good man, who bore the scars of age and experience on his face, stood quietly against the wall and seemed to find great joy in the happiness of my son. I love everything about this photo … not that it is a good photo (because it is not) … I love this image because it captured someone in the very act of goodness. This is what goodness looks like.
I admire the person who thinks less about heaping riches unto themselves and instead looks for ways to love and lift others. I am convinced the key to a rich life isn't found in what we keep, but instead what we give.
I think there’s a special place in heaven for this good man. When I grow up, I want to be just like this man. For he is good and he has a rich life.
As Thanksgiving nears, I can’t help but be overwhelmed with gratitude. Though I lost my son, a little person and friend most precious to me, I am grateful I had him in the first place. I am grateful for my family, true friends and all of you. I am grateful for goodness.
Last night I found Natalie helping Wyatt practice the piano. He was learning to play a simple song. Natalie, unaware, was performing a masterpiece.