Mitch was only home a few days when he asked his mom if he could have an early birthday party saying his real birthday felt “so far away.” Somewhere deep within him, Mitchell knew. His intuition, his true eyes, were beginning to sense something bigger was afoot and the little boy in him wanted to be a boy … just a little longer.
His early birthday was such a treasured experience. We enjoyed seeing some of his closest friends celebrate his birth, life and friendship. Mitch was a humble and broken king for a day. While uncomfortable with all the attention he was getting, he enjoyed his time with his friends, his favorite chocolate cake from Costco, and pizza. An old missionary friend of mine, who had love and compassion in his heart, arranged to have the mascot for the Utah Blaze come to wish him a happy birthday. Little Mitch loved that. He wore the Blaze scarf he was given and held on to the autographed helmet all night. And many of you, his compassionate followers, wished him a happy birthday with loving Facebook posts, cards and gifts.
As his friends gathered round him to throw confetti in the air Mitch quietly smiled. He loved his friends, and they loved him. But something was happening within him and I could see it in his face. His adult soul was quietly emerging.
That evening my sister gave Mitch some helium balloons that had little glow sticks in them. They hugged the ceiling like florescent zeppelins as his room looked like a dimly lit moonscape. As my wife and I tucked him we told him how wonderful he was and that we loved him with all of our hearts. His eyes filled with tears as he told us he loved us, too. Our son drifted to sleep feeling loved. And of all the gifts we could give him, love was the most important. Yet I knew in my heart there was no gift I could give my son equal to the gift he was to me.
As I crawled into my own bed Mitchell’s birthday played back in my mind like a home movie. My heart was full but my soul trembled that night. I heard my son’s voice in my mind over-and-over: “My birthday feels so far away.” I marveled how a young boy could have such a distinct impression. He didn't know the details, but he had a sense of things. And often, a sense of things is all we ever get and we must do the spiritual work of understanding the meaning of it all.
Mitchell’s impression was not an isolated experience. At a later time I may share some other things that happened; things that showed me that all that is out of mortal view is, in fact, not so far away. It is closer than we know.
I have been taught that inasmuch as we serve each other, we are also serving God. So, I am deeply grateful to all of you who served my son by lifting his troubled heart. Your gift of love to him was also a gift to his parents. From the depths of our hearts, we thank you.
This little boy, who had to walk a lonely road, felt a little less lonely this day. And for that, I am grateful.
A few years ago we took Mitch to an MDA camp. He always had mixed feelings about going because he didn't like being away from home. It was also hard for him to see other children who were much further along the devastating path of DMD.
Over the years I learned to pay close attention to Mitch. Though quiet around people he didn't know, he always left breadcrumbs that told me he was thinking and feeling more deeply than he would lead others to believe. My experience with Mitch taught me how to hear what was never said aloud and to see what was often invisible to others. Learning to hear and see things that weren't obvious helped me love and serve my son and for that I am grateful.
So, as Natalie stood in line to register Mitch for MDA camp I was taking photos of … everything. Amidst the chaos of checking in I saw a young boy pass by whose muscle deterioration was more advanced than Mitchell’s. Mitch was polite enough not to stare, but he did notice this young boy out of the corner of his eye. As this young man passed I could see Mitchell’s head following him gently until the boy was behind him and out of view. Mitch then looked out the window pondering deeply, trying to make sense of things.
It was on this day I began to see Mitchell’s true eyes: eyes that read between the lines, see through the superficial … eyes that discern. Little Mitch was beginning to see. It was after this moment that I began to notice an awakening in Mitch. And, over the following months and years I had an unshakable feeling that he was being prepared for a significant change. Just before we learned of Mitchell’s failing heart I remember telling some who were close to me that I had a brooding sense something unusual was happening and that my son was undergoing a spiritual change; a quickening of sorts. I couldn't put my finger on it, I just knew something was happening. My eyes, too, were beginning to see.
Last February, as Natalie and I were driving Mitch home from one of his last excursions he said, “I will never get well. I will never get better. I know I will die.” At the time Mitch didn't know how close he was to death, but he was beginning to sense that something was happening. Swallowing my emotions I calmly responded, “Son, we all die. That is the price of life. But you, and I … and everyone else … will continue to live after our bodies are laid to rest. What really matters it is what we do with our time, and you my sweet son have done great things. You are a good, good boy and I’m so proud of you. Don’t worry about tomorrow, let’s live for today and do the best we can, okay?” Mitch nodded his head and we began to talk about the next Lego base we were going to build.
Since that exchange in the car Natalie and I had a few other sacred conversations with our son during the weeks leading up to his passing. The closer Mitch came to death the more I started to see in him an adult soul clothed in a 10-year-olds broken body. Sometimes it was difficult to distinguish what I saw with my mortal eyes from what I was beginning to see with my spiritual eyes.
I remember telling Mitch at one point “You are not your body. We are so much more than we can see with our mortal eyes.” Mitchell’s countenance told me he was not only absorbing my words, he was beginning to see things as they really are … that life doesn't end with death.
Author Dean Koontz wrote, “Intuition is seeing with the soul.” I love that.
And, over the years I have noticed that without intuition, without eyes to see, it is easy to get wrapped up in the thick of thin things. When I look back on my experience with my son I can see that while Mitchell’s spiritual eyes were opening, so were mine.
With all that was happening I realized then [and now] that Mitchell’s soul is older than I know. But I miss my 10-year-old. So very much. What I wouldn't do for one more day, one more hour, one more second with my boy.
And while my mortal eyes are clouded with tears - ever searching for my son - I have other eyes that see past the sorrow. Eyes that see clearly. Eyes to see.
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.