Without realizing it, my sweet wife often put her hand on Mitchell’s chest as if to somehow read, like fingers tumbling over braille, the fatal secrets his body held. We were waiting to learn the news about Mitchell’s heart and expecting to hear all was well and that the therapies put in place earlier that spring were working.
A few minutes after this photo Mitchell’s mild-mannered cardiologist entered the examination room and invited our daughter to take Mitch on a stroll down the hall so we could have a conversation. He would then tell us he was gravely concerned Mitch was at risk of sudden death because his heart function was dangerously low. We immediately petitioned the medical board for Mitch to qualify for a heart transplant. A few weeks later he would be denied because it was thought his diagnosis of DMD was a contraindication to transplant.
It was Halloween that night and Mitch was excited to trick-or-treat. He would only visit a few close neighbors before he became too weary to carry on. Mitch was always careful to ration his candy and never ate it in excess. In my estimation, restraint is a hallmark of maturity – and Mitch had a great deal of restraint and self-discipline. In truth, Mitch was most excited to go home and give candy to kids who came to our door – for he much preferred giving than receiving. To me, that was a beautifully quite measure of this young boy’s heart – for he would rather give than receive.
When I think of my dear wife and son, both with broken hearts – I change a little on the inside. I care less about things of the world and outward appearances and I ponder deeply on matters of the heart. For matters of the heart are also matters of the soul. In the end, those are the only things that matter.
A few months later, as Mitch began to slip into the abyss while at the hospital, then home on hospice; Tyson Breckenridge an old High School friend, collaborated with another old friend, Tyler Streeter, who has become a talented artist. Together they selected a photograph of my son and Tyler began the labor of love by paining my son’s likeness. Our family was so wrapped up in the calamity of our son’s failing heart and then his death we didn't know they were performing such a kind gesture of love and service. Then, one day, a not long after my son had passed I received a package in the mail with a handwritten letter. Tyler wrote, “It is so ironic to me that a young boy with a malfunctioning heart could fill so many other hearts with so much love.” He continued to describe how painting my son was an emotional experience for him and that he cried many times while painting my boy.
I wept when I read his letter. I even wept today when I read his words again. This gift from these two great men was more than an original painting … it was a gift from the heart and soul. I will forever be indebted to them for their kindness. The original paining, so artfully crafted by Tyler and lovingly orchestrated by Tyson, now hangs in our home on a very special wall, in a very special room. Tyler entitled the painting, “The Gift.” You can see a beautiful time-lapse video of the painting here: www.youtube.com/watch?v=Nxsptlwyk8E
A title aptly given … for if none else, Mitchell was at least a gift to me. As a young child I never considered that a gift might hurt. It never entered my mind that a hardship as heavy as losing my son might break me in places I didn't know existed, yet still be a gift. Who would have thought such strange things? Indeed, heavens ways are not our ways … and as the heavens are higher than the earth, so are God’s ways higher than our ways … His thoughts, than our thoughts.
Heaven’s gifts aren't always easy to see; they hide in plain sight or obscured by our vanity. What’s more, our Father’s gifts aren't always comfortable or easy – sometimes they hurt or bring us to our knees. That’s the gift! That’s what I've learned, you see: sometimes heaven is only as far away as our knees. A gift my son and broken heart would painfully teach me.
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
At the head of my son’s bed lay his favorite Halo mask and toy gun.
I purchased that mask when Mitch went to work with me, just before his last Halloween. He loved to have pretend battles with his friends; many of whom would call him “Sir” or “Master Chief” to show their willingness to follow his lead. While Mitch was physically weakest among them, he possessed a strength and influence that transcended muscle and bone. Mitch, unaware, was a quiet but natural leader.
Even to this day, almost two years since I lost him, he leads me in the battle field of life. Whether I wrestle with enemies of the mind and heart, or take refuge from a sudden onslaught of grief, Mitch has shown me what it means to fight the good fight and to endure suffering with a grateful, loving heart. Though I cannot always control the struggles of life, I can decide how to respond to those struggles. How I respond makes all the difference.
I draw strength and inspiration from my timid little boy who struggled to walk, breathe and eventually live. I'll never forget little Mitch laying in this very spot, saying in shallow breath, “I don't think I can survive.” That quiet utterance broke my heart then and it breaks it again today.
Little Mitch faced an implacable, fatal enemy; and though DMD took his life, he fought the good fight, and he won. Mitch reminded me the battles that matter most in life have less to do with the body and more to do with the soul.
He taught me how to look past my troubles and find gratitude with what I have. Mitch taught me whatever I have is enough … and when there isn't enough, to share anyway. Mitch taught me how to bear my burdens with a glad heart and cheerful countenance. He showed me a heavenly paradox … that to lift another’s burden strangely lifts my own. These lessons, and many others, have sunk deep into my bones.
My sweet boy fought the good fight, and though he died, he won. As I face different battles I hope to fight the good fight so that one day, on some distant field, I might see my son.
There are a lot of moments in life I wish I could do over so I could do them better. Then there are some moments that are so wonderful I want to do them over so I can re-experience them. This was one of those moments I wish I could do over.
It was January 9th, 2013 when my sweet wife sent me a text message about a lunch date I had with my son that day. Because I’m an impulsive memorist, I screen captured her message the moment I received it. Looking back, I’m so glad I did.
This was just a few short weeks before Mitch went to the hospital for end-stage heart failure. On this day Mitchell’s school invited parents to have lunch with their kids in the cafeteria. I had known about this for a few weeks and I was so excited to hang out with my son. At his request I brought him an Arby’s sandwich, curly fries and a chocolate shake. That was his favorite, and mine too.
As we sat in the cafeteria Mitchell’s aide, Alex, asked if he could sit with us. I was excited to have him spend time with us so I could learn a little more about how Mitch was doing at school. Mitch liked Alex and trusted him and seemed to always feel safe around him. Alex doesn't know it, but Mitch talked about him at home often and our hearts were always relieved that he had him as a friend and aide.
Mitch, being soft and shy, sat at the table quietly dipping his curly fries in a generous pool of Arby’s sauce and saying hello to the kids who wandered by and waved at him. I loved to see Mitch in his element and to see that he had friends all around who cared about him. I was also able to watch Mitch play UNO during recess and was reminded that life doesn't have to be perfect to be great. I know that little Mitch had a great life and that soothes my broken heart.
At one point during our conversation Alex started to tell me something about Mitch and his older brother that touched his heart and in turn touched mine. He said that every day, without fail, Ethan (his older brother) would come up to Mitch at lunch and say hello and give him a brotherly hug. Alex mentioned how that act of kindness affected him and he started to tear up. This grown man, a retired commercial pilot and former military officer, who has seen more in his life than Mitch and I combined was moved to tears by that gentle act of kindness between two brothers. I remember being almost moved to tears by what Alex said and how it affected him. I was grateful then, and remain today, that this good man was part of my son’s life.
I was also reminded that Mitchell’s Journey was so much more than the journey of my broken boy. As I wrote in a recent post … “I used to envision life's journey as a single, straight path. But the older I get, the more I'm beginning to see, just how intertwined our lives really can be. Life is not a path to be tread by one, but a web so intricate and woven … it is, I am certain, heavenly spun.”
This was my last school lunch with Mitch … almost 2 years to this very day. I wish I could go back in time and drink in this moment more deeply. I wish I could do this day over, not because it was bad, but because it was that good. I can’t think of a single business meeting that was more important than spending time with my son at this very moment. This day was an investment in time and attention that is paying dividends far beyond grief and loss.
The truth is, I've made a hundred million mistakes in my life. In so many ways I identify with the phrase, “O wretched man that I am.” But once in a while I get things right. On this day I got it right. I spent time with my son and lived what I valued – and that is worth more to me than all the treasures of earth. On top of that, I spent a moment with this good man who loved my son and shared something I wouldn't have ever known … and because of that, I learned a lesson of love that day I shall not soon forget.
So, although I wish I could do this day over so that I might re-live the love that I felt for my son, because I did my best to be with him, instead of wishing for what might have been, I can at least be grateful for what has been. I can’t re-do moments – but I can re-live them in my mind and heart. And that’s close enough. Today and forevermore, I hope to live a little better than the day before – so that when I am old and tired … anxious to pass over so that I might see my little son again … I hope to look back and be glad I lived the life I lived. Perhaps when I truly have heaven’s eyes, I'll look back and want to do my life over … because, despite the weight of grief and depths of sorrow, it was that good.