When Mitch was a chubby little boy he injured his hand. It wasn't serious, but tiny Mitch thought it was so Natalie lovingly wrapped his hand in cotton wraps to let him know she cared and that everything was going to be okay. These bandages were to his hand what his blankies were to his heart and soul.
I remember sitting on the floor in Mitchell’s room watching his dimpled fingers move carefully to make sure everything was okay. I marveled at the miracle of life – for there was a little boy I helped create. How could it be? Just a few years prior he didn’t exist and my heart was none the wiser. Yet there he was – this miracle of life and love. I marveled how this little child could come into my life and not divide my love, but multiply it. Not a day passes I don’t thank my God for my children … for trusting me with His children.
Mitch was so concerned about the pain he felt and whether he would even heal. As his father, I could tell he was young and didn't know what I did. To my sweet baby boy, his injury was the end of the world … for all he knew at that moment was pain. But, having a little more life experience than my son, I could see things he couldn't and I assured him the pain would pass and that he would look back and be better because of it.
Sure enough, a few hours passed and the throbbing pain that had him so concerned disappeared like a cloud on a summer day. All was sunny and well. Mitch, too, understood the importance of not putting his hand in things that could hurt him. He was, indeed, wiser because of that experience. Though it pained me to see my son in sorrow, I did my best to help him learn from that experience and assure him things would be okay.
Losing my son has introduced a pain that goes far beyond the reach of man and medicine. I wish there were mortal bandages to soothe the pains of death. Suddenly the tables have turned and I find myself in a great deal of pain, carefully moving here and there to make sure everything is going to be okay. Like Mitch was back then, I am the child this time, learning lessons from my Father. I hope I’m listening. I hope. And though I stumble and fall a million times, though I may disappoint Him because of things I should have done better or known better, I keep trying. I know He still loves me as I loved my son.
When I see this photo of Mitchell’s little hands my heart swells with great love and deep sorrow. I remember that I, too, am a child learning how to be a better person tomorrow.
I had no idea a few years from the time of this tender photo, years that would pass by in the blink of an eye, that I would hold these same, tender hands in the quiet of night and whisper into my son’s ear to not be afraid. That I would softly tell him how proud I was of the young man he had become … and that one day, when I grow up, I want to be like my son.
These tender hands, so innocent and pure, were put through hardship I wouldn’t understand for a few more years. Looking back now I know, my son was here to teach me how to learn and grow … to worry less about the body and more upon the soul.
I cannot help but think about what it means to hurt and to heal. It is a painful process and oh, so real. But like I tried to teach my son, and my Father is now teaching me, that the pain I feel shall one day pass and soon I shall see.
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.
I took Wyatt to work with me today and had a most wonderful time. He is on the track system and has the next few weeks off and wanted to spend some time with me at the office.
So, he sat patiently while I was in meetings and never once complained. Just after one particular meeting this morning he asked me, "Dad how long was that meeting?" I responded, "Oh, it was about an hour." Wyatt said "Wow, that felt like 4 hours." I smiled, pat him on the head and told him that I loved him. I said, "One day, time won't seem to go so slow ... and you'll wake up and wonder where all the time went. You'll wish for it to slow down, but it will only seem to go by faster."
I then took Wyatt with me to see one of my clients - someone I've worked with for many years and has become a dear friend to me. We've traveled the world together and done some great projects.
My client-turned-friend even attended Mitchell's funeral, not because he had to, but because he cared.
So as I sat at his table ready to talk about some upcoming work for the year, he pushed everything aside, reached into a cupboard and pulled a bucket of treats, placed it on the table and just sat and talked to Wyatt for a while.
My heart swelled, because this good man cared about people ... and at the end of the day people (and relationships) matter most. My heart was especially touched because my friend's mother is dying of ALS right now. Though not the same as DMD, they share many outward characteristics ... most notably catastrophic muscle wasting; and at the end stage an inability to breathe, swallow or move on ones own. The timing is unknowable, but she might only have about a week left. I know his heart is heavy ... but not so heavy that he can't lift the heart of a little boy and help him feel important and good about himself.
Wyatt left his office feeling a lot more confident ... and as small as he is, that he still matters to big people. I am so grateful for good people like my friend Jeff. If the world were a cup, it would be overflowing ... correction, it IS overflowing with good people, just like all of you.
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