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Winter was pressing gently on us and the skiffs of snow and crisp air seemed to promise colder, snowier days ahead. With the holidays approaching, Mitch was excited about the season of dad’s famous hot chocolate, sleigh riding, popcorn and movies by the fireplace, Christmas presents and lots of cuddles. The little boy in me was excited, too.

“When I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.”

— Christopher M. Jones | Mitchell's Journey

I left a busy day of work so I could meet little Mitch at the University of Utah Hospital where he was to meet with Dr. Flanigan, a specialist who is leading some research with neuromuscular disease and DMD. 

Just 20 minutes prior to taking this photo I was in the hall of the hospital peeking at Mitch through the door of an examination room that was open a crack. I was pretending to sneak around while a nurse was doing some benchmark tests. Mitch kept trying to hold in his giggles as if we were both going to get busted. I remember when I was a young child trying to prevent a giggle at church or in school … it was always the moments you weren’t supposed to laugh that seemed to make giggling the most intense. Mitch was having one of those moments where he was about to lose himself in laughter. The nurse played along and pretended to be stiff and orderly – but in her heart, she was giggling with us. I was so grateful for medical staff who care for the heart and soul as much as they do the body.

At the end of the doctor’s visit, I kissed my wife and kids and said goodbye. As I started to walk to my own car, Mitch turned around and smiled as I said “I wuv you Mitchie!” My heart was overflowing then and it overflows today when I look at this photo and see his smiling face. 

I don’t remember the substance of the business meetings I had that day, but I can tell you the meaning of these moments and what happened with my son. I remember what happened because that’s what matters most to me and I chose to be in the moment. If I wasn’t careful, I could have shown up at the hospital but never really arrived. I know how easy it is to be distracted and disconnected from what is in front of us. From the digital devices that entice us away to preoccupations of work or hobby … or perhaps simply stress; it is easy to be somewhere but nowhere. 

I have discovered the true present of being present. Not only did being fully engaged with my son mean a lot to him then, reflecting back on this moment now is a gift of comfort to my weary heart. It is a reminder to me, when I’m tempted to doubt myself, that perhaps once in a while I got something right. It motivates me to keep getting things right. I miss the mark more often than I want to … but I keep trying.

Just the other day I was visiting with my mother about life. I asked her, “What is the one thing in life that has most surprised you?” She said, “The brevity of it.” I immediately felt the truth of her words. Life is brief … and moments are briefer, still. How easy it is to be swept away in the thick of thin things and be robbed of life’s greatest gifts. This photo is a symbol of the present of being present. 

So, when I think back on this cold winter day, while we were carefully wrapping presents we'd soon give away … I realized that very moment the greatest gift we can give one another is time and attention: love from mom and dad, sister and brother. It’s never toys and things our kids are really after … but love, acceptance, guidance and laughter. Those are gifts of greatest import … for life, after all, is exceedingly short. And when I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.

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Mitch lowered his head into his lap, tired of hospital visits and anxious to go home to his friends and family. My son looked to his future with youthful enthusiasm; yet, what he thought was a beautiful sunrise on the horizon of his life was in reality, a darkening sunset. As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could. Medicine was failing us. Medical bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last minute interventions were too little, too late.

I suppose there are a million and one reasons I could be angry with people, medical systems and God for all that has happened. But I am not. I am only grateful. I am grateful for what I did have; for I had a chance to love my little child for 10 amazing years. He became my friend and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.

On my son’s journey through life and death there were many times I cried out in my mind and heart, “Oh, Father, this hurts. Where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered when the night might end. I wondered if it would ever end … for I had never known a darkness so pitch. A grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles.

Two years later I can say with confidence the darkness fades and strength returns. In fact, light and life return. That is not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me. For that I’m grateful.

The question I hear over and over from others on Mitchell’s Journey is “Why?” I’m not sure it’s entirely possible to know why we experience what we do. When hardships come some people get swallowed up in rage and self-destruct. Others blame God for their suffering – as though they should be the only human exception from pain and sorrow. And there are others who insist a loving God wouldn’t let us hurt – therefore He must not exist, or that He is cruel and unkind. There are so many ways to look at pain and suffering. So many ways to learn from it, or run from it.

I shared this in an earlier post: “Whether we settle the question ‘Is God the author of our suffering?’ or not, is immaterial. If our suffering is caused by other means … be it our own poor judgement or the bad choices of others, or perhaps our suffering is just a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.” 

There is an ancient account of three God-fearing men who were to be thrown into a fiery furnace if they didn’t denounce their faith before an unscrupulous king. They boldly replied they would not. They also told the king (Nebuchadnezzar) that they believed God would protect them, but if not, they would remain true. 

But if not … those are easy words to say in Sunday School, Shabbat, or from a pulpit or stage. It is only when we utter those words in our own wilderness of afflictions that the true lesson and test begins. What I’ve learned is we cannot escape hardship: but we can learn and grow from it or we can revile and shrink because of it. I will not shrink.

I believe life is hard because we are meant to become strong as well as good. Despite my heavenward pleas to spare my son, a little boy I loved with all of my heart, I now find myself on the other side of that phrase “but if not.” What I do next with my reality matters. I can shake my fist at the heavens in anger – but that won’t change heaven, it will only change me … for the worse. Or, I can take a knee and plead for understanding and wisdom. I can pray for a soft heart and discerning eyes … to see past mortality’s deceiving guise. For when I hear the terrible ring of death’s loud toll, I am reminded to worry less about the body and more about the soul.

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The incomparable Marco Simmons, an undefeated MMA fighter who competes with purpose. Each fight he honors little Mitch (notice #mitchellsjourneyon his shorts) and helps the general public know about this fatal muscle wasting disease. While I'll share more stories of little Mitch, I have thousands yet to share, I'll also be sharing more of what Mitchell's Journey has put in motion all across the world. 

Marco and his remarkable family have put their arms around other young boys afflicted with DMD, like Caden Gibbs - who you'll hear more about in the coming months. I had the blessing of finally meeting Marco and his sister at our Miles for Mitchell fundraiser last month. He was humble and kind and incredibly caring. 

Marco seems to typify many of the most noble of human characteristics. His personal story is both encouraging and inspiring ... and I am grateful to call him friend.

Marco reminds me that having strength is good, but giving it away in the service of others is divine. 

A real hero in my book.

instagram.com/mitchells_journey

www.facebook.com/marcosimmonsMMA?fref=nf

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It is interesting how grief is made easier when you set aside your own sorrows to help another. Somehow, some way, it hurts a little less. Oh, don't get me wrong; grief is the heaviest burden I know ... it wrenches soul, springs the deepest of tears and makes for the blackest of nights - but I have found service is a candle in all that darkness. Though I weep for Mitch, my heart is full to think that others may be helped a little. Though grief isn't gone, it is a little easier to bear.

We're learning as we go. Though, early on, just after my son's passing, I had high hopes to do more and raise money for this cause faster. What I had hoped to happen didn't. I think my Father is teaching me something ... and I'm trying to listen. In the meantime, we won't stop trying to find our path and help others along the way. 

Natalie's heart was so full this morning. She cries quietly every day for Mitch - so I was glad to see her find joy in serving others. Seen also in this photo [on the right] are two of Natalie's dearest friends who have been an integral part of our charity run. We owe them, and our other committee members, a debt of gratitude.

We're excited to make our first announcement that we will be supporting MDA of Utah's Summer Camp this year. Because of your generous donations and involvement with Miles for Mitchell, we were able to donate $2,000 to MDA of Utah this year so young children can go swimming and fishing (two of Mitchie's favorite things to do).

While it may not sound like much, these boys don't have much time to be children. Before they know it, these young boys (and some girls) will find themselves unable to walk, use their arms or neck and will find their world of possibilities rapidly shrinking.
While others organizations are racing to find a cure (which we fully support), we are racing to give these children a life before it gets taken away.

We hope that the children who attend this year's activity will have warm memories to lift their hearts when life gets difficult for them.

We'll be announcing more of what we're doing this year with the proceeds of the run to help Parent Project MD and other DMD families in the coming weeks. 

Because your involvement has empowered us to help others, you have helped in our own grieving process - because as we serve, we heal. So, from the bottom of my heart, thank you. Thank you for loving. Thank you for caring.

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