It was Monday, February 25th and Mitch asked me to take him to the store. His strength was dwindling quickly and had I known he would die that Friday evening I would have begged him away from every distraction, pleaded with him not to sleep, and to not do anything that would steal time and attention from each other. Even though I did my best to love him and be in the moment, I would have done more. I don’t know how, but my heart tells me I would have done more. I suppose that is part of grief … learning to cope with wanting more.
Mitch always clung to my arm while I drove. If we were traveling as a family he would sit in the back seat on the passenger side so I could reach behind and hold his hand while driving. And when it was just he and I together, Mitch would sit in the front and hold my hand and cling to my arm. I loved how affectionate he was. Mitch melted my heart. And perhaps that is why my heart is broken so …
I miss driving with my son. To this day I long to reach over and hold his hand; in fact, sometimes while driving home from work [almost without realizing it] I find myself reaching toward the passenger seat and imagining Mitch sitting beside me once again holding my arm. Sometimes I cry. Sometimes I feel peace. But I always, always long for my son.
So, on this wintry morning as Mitch and I were headed to the store, I remember Natalie kneeling to the floor and looking Mitch in the eye before we left and saying, “Mitch, I know you like to save your money, but just this time, I want you to splurge. There are other times to save. But right now, I want you to enjoy what you have worked so hard to save.” Mitch smiled softly and said “Okay, Mom.” Natalie knew this would be his last trip to the store.
I couldn't believe all that was happening. There, in my passenger seat, was my weary son dreaming of tomorrow but loving his moment with me. He was on borrowed time – and I think he began to sense it. Mitch asked if he could wear my hat, which I softly placed on his head. I am glad he did because the visor kept him from seeing the waterfall of tears that ran down my face and neck. I quietly took my iPhone and photographed his face and this was his expression. I don’t know what he was thinking at this moment – but this photo haunts me.
Little Mitch had been saving his money for quite some time. As we drove to the store Mitch didn't say much; he just told me he wanted to buy a new wallet, some Nerf guns for himself and his friends, and to see what other neat things were on the shelf.
I always chuckled at Mitchell’s shopping pattern; for as long as I can remember he would load up his scooter or arms or shopping cart with the things he wanted to buy. His boyish appetite for toys was as big as his imagination. But, after 15 minutes of serious deliberation, and after having counted the cost, he would put everything back. Mitch was always more content to leave with nothing but his hard-earned money. He never asked to borrow money, either. Mitch always lived within his means and understood the value of a dollar. Too many people these days confuse the spoils of debt with wealth. My mother once told me that “foolish people pay interest, wise people earn it.” Mitch, it seemed, had a natural wisdom about choice and accountability that is often lost, even in adults.
Mitch always counted the cost of things; whether with money, time or his choices, he was a wise steward over what was his. Mitch was strictly obedient because he never wanted to pay the consequence of poor choices. And because he counted the cost and paid the price, he earned our implicit trust. Mitch always weighed the cost of procrastination; on Saturday mornings while all of his able-bodied siblings were rolling on the floor moaning over their chores, Mitch was quietly getting his chores done with a smile. (And I have pictures to prove it) By the time our other kids were just getting started with their chores, Mitch was long done with his and allowed to play. Mitch knew the value of time and never spent it wasting or whining – just doing. And because he counted the cost and paid the price, he was able to play 3 to 4 times longer than his siblings.
It is fascinating to see what children can teach us, if we only set aside our pride and listen with our hearts. It is no wonder it said of them “of such is the kingdom of heaven”. They are innocent and good … they are noble, worthy and pure. Certainly we have much to teach our children, but they, at times, have so much more to teach us.
I am so thankful for my son who taught me to count the cost of everything. To this day, and forever, I will count the cost of my words, my actions, and thoughts; knowing that I will invariably pay the price for them – good or bad. I hope to have the wisdom of my son … to always count the cost and pay the price … and in so doing live a better life.
As I have been working on a book for Mitchell’s Journey, I have been scrubbing over 1 million photos that I have taken of my family since we started having children. About a month ago I almost lost a little over 800,000 photos, but miraculously that data was saved with very little corruption. A catastrophe averted; another tender mercy.
With all that has happened I am grateful that I have always been liberal in taking photos; because seemingly ordinary moments way back when are priceless today.
Without apology or a moment’s thought I captured everything: the boredom, the laughter, the tears, the drama and on few occasions extreme hardships. So, as I have been working through this sacred vault of family photos the saying “sometimes you will never know the true value of a moment until it becomes a memory” has been playing over and over in my mind. And with each photo-set I poured over that saying was reinforced.
I never delete the blurry or over/under-exposed photos, either. I've noticed, as time passes, that I begin to see magic where I once saw mistakes.
I seem to recall another saying “the only bad photo is the one you never took.” So, my advice to everyone and anyone I know is to take photos. Take them like a paparazzi. In sickness and in heath, in happiness or sorrow … photographs fuel memory … and memory fuels the heart and soul.
I have never regretted taking a photo. In fact, I worry that I didn't [and don't] take enough.
For the last few weeks I have spent my evenings looking through some of Mitchell’s more recent adventures and my heart has swelled with gladness as I was reminded this little boy had a great life. And a great life isn't purchased with money or things – but given through an abundance of love, time and attention. And that is what we tried to give him, and our other children, every day in our own way.
For many of Mitchell’s life experiences I have my sweet wife to credit. Natalie, ever the conscientious mother, was never content with allowing our kids to consume endless television or video games. She regularly set aside her own convenience to ensure they were active and trying new things. I continue to honor and learn from her every day.
As I look at this thin slice of Mitchell’s life, only 25 photos, I can’t help but know the truth of those words: “sometimes you will never know the true value of a moment until it becomes a memory.”
From holding Mitchell’s hand in the car, to sticking his head through my sunroof to feel the air on his face, to the twinkle in his eye on a swing set … there are no ordinary moments. Not one.
I am so grateful for happy memories. And because we have photos of these moments … lots of them … our joys and memories are all the richer.
My cup, while cracked and tattered by adversity, is running over.
Several years ago I introduced a concept to my mother called ‘Cousins Camp’. I had recently discovered it through a client of mine who also had a large family and I thought we could benefit from following their example. In essence, it’s a 3-4 day family retreat where all of the cousins get together and participate in a variety of family & team-building activities. The responsibility to run the program rotates each year among the mothers so everyone gets a chance to lead. For many years now Cousins Camp has become a family staple and something the cousins/grandchildren look forward to each summer.
A few summers ago, during our annual Cousins Camp, a small structure had been built near a small grove of trees at our family ranch. While concrete was being poured around the foundation my mother had arranged for each of the grandchildren to leave their hand print as the concrete was setting. Mitch, while eternally shy and quiet, was excited to participate. He had no idea at the time how precious his contribution would soon become to his mother and father.
Fast-forward to the summer of 2013 when I visited my mother’s ranch and stumbled across Mitchell’s hand print. I had all but forgotten about it. But there it was, covered in leaves like a secret nature was trying to keep ... obscured by the shifting shadow of the trees. Upon seeing it I fell to my knees and immediately sobbed. I couldn't believe how small and sweet his hand was and how I wished to hold it so. Within eye-shot of my son’s hand print was the tree-fort bridge he so bravely crossed when he was an even younger boy. Suddenly I was haunted by days gone by and longed for the warmth and comfort of yesteryear.
As I sat on the dirt trying to collect myself I couldn't help but think that 20 years from now that very bridge where Mitch showed such bravery will have weathered and decayed and all the cousins, who are children now, will have families of their own. The echo of days gone by will become fainter, and eventually silent. Their children, like all children, will look to the hope and promise of tomorrow – giving little thought to those who came before them.
We may not remember the details of days gone by, but the effects of those moments, good or bad, will long outlast their memory. Watching my own children grow, and die, has been cause for serious reflection. Whether we place our hands in setting concrete or find our hands in each other’s lives, we are shaping each other … and ourselves … and leaving a lasting impression.
My little son’s hands have painfully shaped me. Now, as I look to my own hands, I promise to use them to bind wounds and never be the cause of them; to use them to build and not destroy, to love and not hate.
That little hand print hidden in the shadow of the woods, from a boy who was as sweet and shy as he was broken, has left more than an impression in concrete. And I vow to never allow the passage of time or easier paths to undo the lessons he taught me at so high a price.
Just a few days before Thanksgiving we were told Mitch was denied a heart transplant because of his underlying diagnosis of DMD. We were told our son would potentially die in a few months and most certainly within a few years. Later that night I put this video together journaling what happened on this difficult day: https://vimeo.com/54167124.
Natalie and I left the hospital scared and overcome with a kind of darkness one rarely encounters in life. We found ourselves at once empty hearted and smothered in sorrow. Everything seemed strange to us. Nothing felt real. The hospital’s hallway felt so very long as we pushed our son in his wheelchair toward the exit. By the time we got to our car our minds were fixated on the biological grenade in our son’s chest. We had come to the horrifying realization the pin had been pulled and there was no way of knowing how and when the calamity would strike.
We swallowed the massive lump in our throats, dried our eyes and did our best to table our emotions. Sweet Mitch didn't know what was happening – and there was no point in telling him at the time. He was so young and to lay such heavy things on his shoulders would have only terrified him – and that would have been cruel.
It was our tradition to take Mitch to lunch after our cardiology visits. He loved Panda Express and that is where we went this day. His fortune, as fate would have it, read: “Your courage will reward you.” I remember posting that fortune on Instagram as well as this Facebook Page. A foreshadow of things to come.
After lunch I remember watching in awe two of my greatest heroes: a broken mother and an even more broken son. I remember trying to catch my breath and hold back my tears as I saw Natalie carry our boy with a smile, hiding her broken heart so as not to frighten him. Natalie was [and remains] eternally selfless and endlessly loving. She has never carried her burdens with a grudge – no matter how heavy or painful. And though her heart was heavy this day, and every day thereafter, she looked for every opportunity to make our son’s burdens light. To this day, she continues to look for ways to make the burdens of others light. I love and admire her.
Our son reminded us that burdens can be blessings. Even though my son’s disability carried with it the burden of care and inconvenience, it has been a profound blessing to have him in our lives. It is something of a heavenly paradox to witness … how the things that weigh us down make us stronger.
So we may become strong ... that is why burdens can be blessings.