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.
I get a lot of private inquiries about how our family is doing; these kind people recognize Mitchell's Journey has become a place of reflection on grief and healing, yet gently ask how my other children are doing.
Just last night Laura-Ashley went to her first Prom. She always asks me to take her photos and I love doing them for her because she is my precious daughter and I love her so.
Portraiture is not my thing for many reasons - perhaps because, any more, everything has already been done before. Despite my tendency to steer away from portraits, I enjoy trying them from time-to-time.
Last night, before my daughter's dinner date, I took their Prom photos. It was fun.
My daughter has grown quite a bit since Mitchell passed away. She really, really loved him and grieves in ways only a sister knows. We talk about him often in loving, happy ways.
As a father and parent, I am pained daily by my son's absence, yet I never loose sight of the beautiful gift of family and the wonderfully loving children I still have.
My cup, while broken, runneth over. And I am grateful.
There are so many layers to Mitchell’s Journey … so many stories to share.
I remember taking our young family to the family ranch in southern Utah. I had nicknamed it, “The Other Side of Narnia” because there was something magical about ranch’s relative isolation from the world. At first I used to get frustrated cell signals are spotty at best – most of the time I don’t get one. But then, in a moment of sanity, I realized what a blessing it is to be cut off from the rest of the mad world so I could focus on the things that truly mattered.
One summer afternoon, just before the sun was about to set, I found Mitch, tiny Wyatt and my step-father sitting on a bench by a pond talking as only grandparents and grandchildren know to do. My heart swelled with gratitude to see this good man love my children. There sat a man who didn’t raise me and had every reason to be about other things that day. For that seems to be the work of men … to be busy building, chasing or collecting things. Instead, he choose to stay with my boys and spend time with them.
In 1931, William Lyon Phelps wrote, “The final test of a gentleman is his attitude toward children. I wonder if all men remember as vividly as I do [how] grown-up people treated us …” I thought of that statement as I watched Garth … I was so grateful to see this good man spend loving time with my boys. He wanted them to know they were important and loved. That he invested time was good, but he invested his love and attention and that was greater. There is a difference.
My mother and Garth drove to our home the night Mitch passed away. I remember them both entering my son’s room, long after the sky became dark. They sat reverently at the foot of my little boy’s bed and seemed to peer upon him with sorrow, reverence and compassion. I don’t know what crossed Garth’s mind that night. Perhaps he thought of his own son he lost a few years prior. A son he loved dearly and misses so. As I looked at my step-father peer upon my dying son, I remembered this photo and tender moment between him and Mitch. To this day, I don’t think Garth knows what this singular moment meant to my son and how often Mitch reflected on it. I will forever be grateful for this moment.
I am just like every man that ever was. I am flawed and sometimes unsure of myself – and perhaps I’m more transparent than I should be. But I believe what you get should be what you see. I am also prone to build, chase and collect things. Any more, I am trying to build my family, chase my children around the couch in laughter and collect moments that matter. For in the end, those are the things that last. Those are the things that shape tomorrow and protect our hearts from a deeper form of grief and sorrow.
These are the moments that matter most. When I die and see my Father and Son, they won’t care about the cars I drove or the depth and size of my treasure trove. Instead, they’ll care more about things one cannot see … the love in my heart and whether I gave to others in need generously.
No matter how brilliant or carefully our lives are planned, if we don’t give mind to the little things, we will miss life’s magic moments. Best to catch these little moments ... catch them while you can.
-------------------------
Note: Mitch loved fishing with all of his heart. This summer, Mitchell’s Journey is sponsoring an MDA Summer Camp activity named after our son. We want to help other young boys go fishing and make memories that matter. If you haven’t signed up for our Miles for Mitchell run, please do. This is the run that will help fund this activity and other things that matter.
Here’s the link to our charity run:
www.raceentry.com/race-reviews/miles-for-mitchell