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.”
As far as I can remember, every time I've encountered a catastrophe in life I was bewildered by the challenge in front of me. “How can I possibly do this?” I would think to myself, “I’m not capable or prepared.”
When we learned of Mitchell’s diagnosis the road ahead appeared broken and treacherous and seemed to stretch for miles and miles … even to infinity. Those were days that had me struggling to catch my breath and steady my step. One thing I've learned on Mitchell’s Journey is the first mile is always the hardest.
The truth is, we've had many first miles. The day Mitch was diagnosed with DMD was a first mile and the road ahead was obscured by fear and the fog of the unknown. Often, for the first while, I found myself stumbling over … everything. The weight of grief was new to me and I had to learn to adjust to new burdens. Over time, the journey got a little easier. It wasn't that the obstacles were different or burdens removed, but my ability to navigate grew stronger. I have my Father to thank for that – for He has been my tutor in matters of the soul … perfectly kind and infinitely patient. One day I will fall at His feet and thank Him for everything.
At various points along our son’s journey we would encounter new challenges and new first miles. The day we learned Mitchell’s heart was failing was a new first mile, a new challenge. Six months later I would take this photo as we learned therapies weren't working: another first mile. Never had a hallway felt so long. Before we knew it we learned sweet Mitch was experiencing end-stage heart failure … another first mile. Finally, in what seemed in the blink of an eye, my son died and I had to walk the longest, loneliest mile of my life. Heaven felt next door, yet so far away.
Just yesterday I visited Mitch at the cemetery. I wanted to place two solar lights that might shine on his headstone at night. While there I met a woman whose husband died tragically just over a year ago. He is buried just a few plots away from my son. She had 3 beautiful children and a kind demeanor. My heart went out to that family and I grieved for them. My heart went out to those young children who are without a father. I prayed in my heart they would find comfort and peace.
At one point I asked how her grief journey was going and she replied just as I suspected … a mixture of progress and pain. She then told me how others tried to prepare her for the 1 year milestone … that somehow everything would get easier after that. To her disappointment, the one year anniversary passed and nothing changed – grief remained. Her loss and heartache was the same. I identified with her and said I heard the same nonsense from others. I told her I thought what she was feeling was normal and that I felt the same way.
I had the words in my mind, but I didn't think to say them to her; I just said to myself, “The first mile is always the hardest.” As I drove home I began to ponder what the first mile means to me. It isn't measured by time or anniversaries (such a thought is foolishness) … to me the first mile is a metaphor that points to deeply personal journey of grief. It can’t be seen or measured – only felt. Some people seem to run the first mile quickly, others walk, some crawl … but at some point in our journey with grief we make it past the first mile.
How do we know when we've passed the first mile? I’m not sure I know the answer … but at least for me, I think I have passed that threshold because I don’t live in a constant state of grief. Today, I have grief moments, almost daily, but I don’t live in a constant state of grief. Yes, I still weep and long for my son, but like a summer storm, it passes and soon I see the sun.
To be clear, grief is the longest mile I've ever known. Indeed, the journey of grief seems to stretch out to infinity; but I know where that road leads, even to eternity.
Yet, I am still mortal … I see so little, and understand even less. Though I know my son’s soul lives on, the father in me is empty and bereft. Thus, the pain of grief remains. Though my legs are weary and I often stop to catch my breath, this much I know: I've passed the first mile and I hurt a little less.
Mitchell’s last Nerf gun battle lasted 2 minutes. Just as his war game was beginning to unfold, he leaned against the wall about to pass out while taking very shallow breaths. With a whisper in his ear, “I love you”, Natalie lifted our son in her arms and gently took him back to his room. Mitchell looked off into the distance with his arms softly wrapped around his mom.
We knew there wasn't much time to play. So, just prior to the Nerf battle, Natalie made haste and quickly tore a piece of fabric from one of her dresses to make a headband – to show little Mitch she was “all in”.
As I followed them back to Mitchell’s room, my heart swelled with a love and sadness that to this day I cannot find words to describe. In her arms was our dying son who just wanted to be a little boy.
Mitchell would never leave his room alive.
During his time at home Mitchell received hand-written letters and packages from all manner of military officers who were serving all over the world – some in hostile theatres. They had been following Mitch and wanted him to know they were inspired by his courage and strength. Some even said it was for him they fought. One of the tender ironies was Mitchell loved the military and was so touched they would even think to write him. Call of Duty was one of his favorite games and, for a 10 year old, he had a brilliant tactical mind. Upon reading some of these letters from Marines, Mitchell would ask me “Dad, do they really think I’m strong?” I turned to my son and said, “Son, in every way that matters you are as strong as they get, and I am so proud of you.” His brow furrowed as he began to think deeply on my words.
Mitchell was so tired and listless at the time, but I continued, “Let me tell you why I think you’re as strong as people get: real strength is doing the right thing when nobody is looking … and you have always done that. You are trustworthy and obedient and good. I am so proud to call you my son. Strength, the kind of strength that matters, isn't found in the body, but in the soul. And Mitch, you have a very strong soul. I love you so much.” I kissed his forehead and he lifted his arm around my neck to hug. If only I could have frozen time …
Within 24 hours of this photo little Mitch would gaze out his window for the last time and contemplate his life and accept the harsh reality of his death. This young warrior, who was mortally wounded by an invisible enemy, demonstrated one of the highest forms of strength and selflessness by telling his mom he was going to be okay.
Having lost my son to a biological enemy that knows no ransom, has no mercy, and offers no remission … I have decided to take up arms against this enemy of the body: to fight Duchenne Muscular Dystrophy with all that I am. This is a battle worth fighting because little boys like mine deserve to live - and any family is at risk.
I have been taught that if we turn to God, weak things can become strong things; that God gives us weaknesses so we can become humble, and if we turn to Him in our weaknesses, God will make weak things become strong things. That is one of the reasons we are given hardships in this life. Today, I have more weaknesses than I have strengths but I hope, in time, I can become as strong as my little son.
There have been agonizing moments, while stumbling in the pitch darkness of grief and loss that my soul has cried out “if anyone deserved to live, it was my son”, and that I should have been taken instead. Then a whisper to my soul reminded me death is not punishment, but rather a transition from one state of being to another. I was reminded of an 18th Century philosopher who said “We are not human beings having a spiritual experience; we are spiritual beings having a human experience.”
The purpose of life: a masterfully calculated landscape of hardship, happiness and putting trust in things that are invisible to the eye but discerned spiritually … all in an effort to refine our souls. And while the world seems in a constant state of unrest and war … I find myself ever more concerned about the quiet battles of the soul … the kind of battles that destroy us from within. Those, too, are battles worth fighting – and fighting well.
I've been out of town most of this week on business and landed in Salt Lake early this morning, then drove straight to the office.
On my drive home tonight all I could think about was how excited I was to see my little family. I miss them a great deal. On my way home I stopped by to see Mitch and saw that Natalie had changed his flowers.
I was brought to tears to think how much his mommy cares about him and how she tries to love and serve him even though he is gone. She remembers the smallest details, including little birds that Mitch adored, in her arrangements.
Dressing up Mitchell's headstone is one of her grief rituals, and I adore her for it.
D