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.
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.
After little Mitch realized his hand was going to be okay his mother picked him up and held him as only a mother knows to hold her child. To a young one, there is a certain comfort that comes from blankets and Sippy Cups, but then there’s the comfort that comes from a mother; and no blanket on earth can replace the warm embrace of a loving mother.
Though not an envious man, I am sometimes sorely tempted, when I see the tender bond between mother and child. Though my heart loves deeply, I recognize there is a sacred place for a mother’s love. I wish I had a piece of that because it is beautiful beyond measure. Instead, I’ll take what I can get while sitting on the sidelines and consider myself blessed.
So there I stood, in my dorky way, trying to comfort my son. I didn't stand a chance against the blanket and Sippy Cup, let alone his mommy’s embrace. I made funny faces and danced like a fool for him and he started to chuckle. His smile, this very smile you see here, and eyes shrunk-wrapped in tears melted my heart. Though I offered a little sideshow entertainment for my boy, the real performance was already underway by his mother.
I think, on some level, I’m beginning to understand Kate Bush’s lyrics “I stand outside this woman’s work … this woman’s world. Ooh, its hard on the man, now his part is over, now starts the craft of the Father.” There is a sacredness to motherhood … something far beyond my reach. Though I do my best to be a good dad and husband, I am beginning to realize I am a small player on a much grander stage. However much I do my part, it is minor by comparison.
Neal Maxwell wrote, “When the real history of mankind is fully disclosed, will it feature the echoes of gunfire or the shaping sound of lullabies? The great armistices made by military men or the peacemaking of women in homes and in neighborhoods? Will what happened in cradles and kitchens prove to be more controlling than what happened in congresses? When the surf of the centuries has made the great pyramids so much sand, the everlasting family will still be standing…”
When we started our family we had no idea what we were doing. We still don’t on some level because each phase of child-rearing, at least for us, is undiscovered country. Yet we’re learning things each day that we try to apply in the things we do and say. I wish I could wield the parenting power my wife seems to shoulder so gracefully. Such is the power of motherhood, I suppose. I’m just an ordinary dad with more weaknesses than most. So I’ll just try to pave the way, moving obstacles where I can and make life a little easier for her each day.
Our journey of grief, like everyone who hurts, is painfully unique. It’s a delicate balance of looking forward to sights unseen, while giving myself permission to hurt because I’m still a human being. That’s the thing nobody told me … healing hurts.
Though I’m still hurting, I’m also healing … and that is a wonderful, wonderful feeling.