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Just before a painful procedure, Mitch grabbed my arm and squeezed my hand as if to hug me. Although I was trying to love and comfort my dying son, he seemed to find greater comfort loving me. I loved how he loved.

“Looking back, I have not had the life I wanted … but it has been everything I’ve needed. ”

— Christopher M. Jones | Mitchell's Journey

It was a strange thing to watch the hospice nurse keep our son healthy, just long enough to die. She did a marvelous job managing our son’s pain, guiding my broken wife and me through the process of death and dying, and offering insights on how to cope with grief. She warned us that everything we were experiencing at the time was the easy stuff – and that much harder, darker days were ahead. She was right.

As Mitch and I were hugging hands, it took every ounce of strength to hold back my tears – for I wanted to bury my head in the couch and weep like a child. I thought to myself, “This is not the life I wanted. How can I possibly save him?” My bright dreams of becoming a father had turned into a nightmare of the blackest velvet pitch.

My son would soon die and I would experience a grief so great, there are simply no words to describe it. Then, my professional world turned upside down. Good people, who might have been mentors, turned dark and twisted. Life went from bad to worse. When I thought things couldn’t get worse, life became darker still. Grief would soon take a toll on my surviving children – which as a parent was heartbreaking. I don’t write about their grief journey because I respect their privacy. But I will say that sibling grief is real and my wife and I do all that we can to help our children the best we can.

Looking back, I have not had the life I wanted … but it has been everything I’ve needed. I didn’t want to lose little Mitch – but his life and death have changed me for the better. I am not mad at God. But I am sad … and that’s okay. I don’t allow other life challenges, disappointments, and failures to make me bitter – I’m trying to figure out how they can help make me a little better. I have a long, long way to go. I am still learning to live with disappointment and grief -- but I am also learning to live in harmony and peace.

I know when I die, I will go to that place beyond the hills and see my boy again. And if there are no tears in heaven, I will be the first to make them – and the stars will bathe in them. Perhaps we will hold hands like this again – where I try to comfort Mitch and he comforts me. I have a feeling that we’ll look back on our lives and say “Well, it wasn’t the life we wanted but it taught us everything we needed.”

When I see life through that lens, I understand things differently, indeed. For we are souls eternal; gathering light and knowledge, even to infinity.

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I remember nervously asking Natalie to join me at a family reunion in Nevada. I was a college student, trying to figure out what I wanted to be when I grew up. I was just a goofy guy – a geek on every level. She worked in a law office and always intimidated me. In her mind, she quietly felt as though she lost her glass slipper, an intruder at the ball, and that she wasn’t anything special. To me, she was a princess, unaware – more beautiful and remarkable than she had eyes to see. How often I tried to say, “If you don’t believe your eyes, please believe me.”

So when she said yes to my invitation, I almost couldn’t believe it.

I remember the long six-hour drive to Mesquite, Nevada. I worried about boring her. I worried that if she discovered the real me … you know, the ordinary, flawed me … perhaps she would lose interest. On so many levels, I felt like an impostor; for I felt far less than what I might have seemed. But I set those self-doubts aside and trusted where my heart was leading me. All I could do was be me and hope for the best.

“Nineteen years have passed and this humble princess who felt like a peasant has become, at least to me, the most beautiful and courageous person on earth. I remain, and will ever be, deep in her shadow. For her light shines brightly, so often helping me to see. Me, the true peasant, and she, royalty.”

— Christopher Jones | Mitchell's Journey

I’ll never forget that long drive. We talked and laughed and before we knew it, the 6-hour drive felt like 30 minutes. At one point, our arms were resting on the center console and they almost touched … my heart nearly exploded. It was on this same trip Natalie and I sat at the edge of a swimming pool under a moonlit sky when I asked her if she would marry me. I didn’t have a ring in my pocket – I just had a lot of love in my heart and I wanted to give it all to her.

Somehow this extraordinary woman said yes to a most ordinary boy.

We started our lives together in humble circumstances. We lived in a dark, spider-ridden basement apartment. We had old furniture and used dishes, hand-me-down books, and thrift-store decorations. We were poor in things of the world – but we were rich in the things that mattered most. As I’ve grown up a little, I’ve discovered the material things we think we want in life often take us away from the things we need.

It wasn’t long before we started our family. Each child was a remarkable gift. Laura-Ashley, our first, was a precious little girl who was smart and sassy. She is almost 18 years old now, and she is still smart and sassy. Ethan soon followed; a loving and sincere boy who was as funny as he was creative. Then came Mitch, a quiet and docile child whose love was transcendent. He would capture our hearts, break them and put our faith to the test. Wyatt soon followed … an alert, passionate and loving boy who would become a ray of light during life’s darkest moments.

I had no idea that the girl who swept me off my feet and made my voice tremble and hands shake as a college student would soon become my soul mate and that our life journey would take us down such unexpected, soul-stretching paths. I wish I could say life went according to plan. To the contrary, our greatest nightmare became our waking reality. We’ve had wins and losses. We’ve endured famine and weathered terrible storms. During times of trouble, we clung to each other and held on the best we knew how.

Nineteen years have passed and this humble princess who felt like a peasant has become, at least to me, the most beautiful and courageous person on earth. I remain, and will ever be, deep in her shadow. For her light shines brightly, so often helping me to see. Me, the true peasant, and she, royalty.

When we’ve reached our golden age, when our lives are nearly done, I’ll look back and count my blessings and know that Natalie was the biggest one.

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“Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.”

— Christopher M. Jones | Mitchell's Journey

We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs. 

Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.

He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life." 

I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.

I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong. nWhatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.

He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see see will come from the light within.

Gratitude not strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.
 

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“Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it. ”

— Christopher M. Jones | Mitchell's Journey

It was a hot, muggy and vaguely miserable summer-like afternoon. We were at a family reunion/vacation far from home. The days were long, and there was a lot of travelling and waiting in the heat. Even the shade of trees didn’t offer much comfort from the suffocating humidity. It was easy to feel miserable.

Mitch could tell Ethan was getting worn out by the heat, so he called out to his older brother, “Effie, come over here. I’ll give you a ride.” Ethan smiled with relief and ran to his little brother who wanted only to serve him. With a childlike thump, Ethan plopped his bum on the seat, and Mitch powered up his scooter. Just then, mischievous Mitch turned to his brother and began to blow on his face. “There, are you cool now?” Ethan grimaced, and they both began to laugh and laugh. Mitch never missed an opportunity to laugh or make any heavy situation seem light.

There is a layer to little Mitch I don’t often write about, and that is his sense of humor. As Mitchell’s body grew from toddler to young boy, his mind and soul began to grow in unexpected ways. On more than a thousand-and-one occasions, I was startled by his intelligence, deep insight or brilliant humor. I admired him and often said to myself, “Who are you, really?” I sensed a greatness in him that was just beneath the surface of that otherwise quiet little boy … I sensed an old soul slowly awakening and that he had a very special purpose on this earth. 

As I look at this photo, and many like them, I remember how often Mitch taught me the importance of laughing whenever you can. To this day, some of the funny things he did years ago still make me giggle – and my soul smiles. How I love that little boy. How I miss him.

At the time of this photo, Mitch was becoming noticeably weaker as compared to the rest of his friends. While they ran at top speed, he stumbled and could hardly walk the distance of a basketball court without his legs almost giving out beneath him. While they jumped, he fell to the ground. The world was closing in on little Mitch, and there was no escape from the muscle wasting that was slowly taking his life away from him. 

Life for Mitch was a lot like this hot summer day; it would have been easy to feel miserable. 

What I love about this ordinary image is how it captured his resolve for joy. Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it. 

Oh, what a difference it makes to treasure what we have instead of measure what we don’t. 

Mitch taught me that when I find gratitude in what I have, joy follows. And where there is joy, there is laughter.