It was cold and snowy outside when we heard a tap on our front door. It was Rodney Thornell, a neighbor and friend who lived just a few blocks away. Standing beside him was his own puppy whose face peered upward with the innocence of a sweet child. Rodney and his family named their dog Dragon. Mitch thought that was neat because he loved dragons … and puppies. Mitch later told me, “Dad, what a cool idea. If I get another dog, I want to do the same thing.”
This good man, knowing our son was home on hospice and running out of time, came to our home to cheer Mitch up and offer a smile or two. Mitch laughed and laughed as he watched his tiny puppy bark and jump about as if she were a credible match to her much larger play friend. In Marlie’s mind, she was as big as or bigger than Dragon. It didn’t matter that Dragon’s head was about as big as Marlie’s entire body – she had made up her mind and that was it.
Unaware of his size and relative strength, Dragon’s playful paw would knock Marlie over and she would summersault forward a time or two. Like a snowflake or tiny ninja, Marlie would bounce back to her bitty paws as if nothing happened and go at it again with her adorable little bark. She was a fighter. Just like Mitch.
Mitch loved to watch those dogs play – and so did we.
I don’t think this good man knows what he did for our family and especially little Mitch. He could have sat on the other side of his computer screen, watching our posts and feeling after us. He might have also offered a prayer or two on our behalf. Instead, this good man, who happened to also be our family dentist and had cared for our son’s teeth in previous years, cared also for his heart and soul. He served our family with love and compassion. It is amazing how a little love can lift a broken heart and soul.
Rodney was always kind and considerate to our family. He never stayed too long; just enough to lift our son’s spirits, then he was on his way. He came a few times – which really meant a lot to our family - especially Mitch.
I remember walking him to the door on his last visit before little Mitch passed away. I had a sinking feeling in my heart that would be the last time little Mitch would see them. I swallowed the lump in my throat as my friend walked away. Later that night I prayed that his family would be blessed 1,000-fold for the goodness he showed us.
There is a saying (there are many variations) that goes something like this: “In all things, teach others about [God], and when necessary, use words.” I am grateful for my neighbor, friend and family dentist who taught me heavenly things… not through words, but quiet deeds.
There was a point where Mitch was on the razors edge of ability and disability. This was the point in his life he began to witness his physical strength slip through his fingers like sand on a windy day. No matter how much he tried to keep his strength, it simply would not stay.
Because he seemed vaguely normal, it was easy for others to dismiss his physical needs. Mitch often grappled with whether or not he should drive his scooter or try to walk. For a while he asked his mom or myself to carry him so he could go distances, then be set down to walk on his own and not stand out from the crowd. He wanted to feel normal as long as possible. Natalie, his tender mother, spared no inconvenience to help him feel normal and empower him to be all that he could be.
On this day I remember hearing Mitch ask in his soft voice, “Mom, will you carry me?” Natalie whispered, “Oh Mitchie, as long as I have you, I’ll carry you.” I’ll never forget how Mitch smiled as he wrapped his arms around his mom and how she carried him down a sidewalk. Mitchie smiled at me as if to say, “Dad, I’m the lucky one.”
I cannot remember a single time Natalie ever complained about caring for Mitch. That’s what love does, you see: it turns burdens into blessings. Sure there were days of exhaustion and discouragement, even moments of grief and fear. But in the end, caring for our little boy meant we still had him - and having him was worth the weight of everything.
Sometimes when I look at all that weighs heavy on my shoulders I can be tempted to think my burdens are my enemy … after all, they hurt and they’re heavy. But when I quiet my heart and try to look at life through heaven’s lens, I know whatever burdens I encounter are not only tender teachers … they are my friends.
Still, when I examine my life honestly, I wonder why my Father even puts up with me – a soul so rebellious and proud as mine. The child in my heart wonders if I’m more work for Him than is worth it. Then, like a whisper, I feel a nudge back to this moment with my wife and son. I remember how much I love my child, no matter how broken he might have seemed; my love for him is infinite and stretches to eternity.
If I would carry my son gladly … patiently … might my Father do the same to me? Something tells me we’re all being carried in ways we cannot yet see.
Perhaps, when all is said and done, we’ll look back on our lives ... hardships and all ... and say, just like little Mitch, “I’m the lucky one.”
Not long after our son passed away a compassionate follower of Mitchell’s Journey asked me for a sample of Mitchell’s handwriting. She had been following our story and felt compelled to give my dear wife something to comfort her weary heart. This is what she made - exactly as Mitch wrote it on paper just a few months prior. This kind woman, now friend, carefully mailed it to me so we could surprise Natalie for Mother’s Day. I offered to pay her for her kindness but she insisted on giving it to my wife as a gift from her heart.
When Natalie looked upon this for the first time her eyes filled with tears because she recognized Mitchie’s handwriting.
This little memento is an echo of Mitchell’s love for his mother. I’m forever grateful for this kind woman, this Good Samaritan, who felt after my grief-stricken wife on the edge of a broken road. Katelynne didn't need to do or say anything, but she did anyway … and her little act of love did a lot.
This is her Facebook page: https://www.facebook.com/SugarplumsJewelry
When Natalie wears this necklace, she often looks at it as if to look upon her son, or at least a breadcrumb he left behind … evidence this little boy lived and loved his mommy.
I’m grateful for this Good Samaritan who took the time to stop; who reached out with a little love and helped my wife a lot.
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