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
I'm grateful for my wife and son; they taught me how to be in darkness and still feel I'm the lucky one. #mitchellsjourney
Several weeks ago Natalie and Laura-Ashley went out for some mother/daughter time. This was one of Natalie’s Instagram posts of their day. I immediately laughed out loud when I saw this photo of Natalie doing her “giddy-on-up” jump. My heart leapt because I love these two girls with all of my heart and I was glad they were having so much fun together. Their joy gave me joy.
Natalie always made Mitch laugh by doing some funny dance or singing at the top of her lungs. She knew how to lift his spirits in such a special way. I love her for that … and I love her, for her. Laura-Ashley also had a special bond with Mitch – he found comfort in being around her and I would often see the two of them hanging out together. At least for me, if ever there is a parental payday, it is seeing the goodness within them. They make me want to be a better person.
I have spent the last (almost) 2 years posting about my grief and my love, my faith and my flaws. Though I write of grief, I do not live in a constant state of grief. I used to live in a constant state of deep sorrow, but not today. Each day is a little sunnier than the day before. To be clear, I have hard things yet to share; stories of grief and sorrow that come from the darkest corners of the soul. I will share them not because I am there, but because I was there. I hope that in sharing it helps others who are drowning in a sea of grief – for I know those dark waters and they are scary beyond belief. To all of you that hurt, I want you to know how much I care.
When I think about my son I smile and my heart swells with love and longing. Sometimes, and sometimes often, when I think of Mitch I cry. I shut my door to my office and I weep a million and ten tears. When I’m done heaving in sorrow, when the emotional storm has passed, I then wipe those tears away and I face the day the best I know how. That is all I can do sometimes, and I think that’s okay.
One of the many things I admire about Natalie is she always seems to find a reason for joy. Though her heart aches in the worst way, she makes the best of every single day. And that is contagious.
In my own grief journey I've discovered heartbreak and grief exist despite the choice to remain in or rise above it. The best way to help others out of grief, I have learned, is to love those that hurt and give heavy hearts time to heal. It is an exquisitely personal and individual journey.
Grief hurts because we love and miss our dear ones. It hurts because they are gone and we want them back. There is nothing wrong with hurting … and it will always hurt. The more I contemplate my own grief journey I'm beginning to wonder if the key to finding joy while living with chronic grief is learning to not mind that it hurts.
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.