HAPPY HALLOWEEN

This was Mitchell’s last October. We went to a local farmer’s lot to pick out some pumpkins to carve. Autumn had slipped away and we were deep into fall, each day getting colder and colder. Except this day was unusually summer-like and the evening sun warmed our skin as if from a nearby fireplace.

In honor of my son, I will look for those whose bags are a little empty and try to fill them with love and encouragement. Where I can, I will try to carry those who stumble, though I often stumble myself. For the key to happiness, I’ve discovered, is found in giving, not getting.
— Christopher M. Jones | Mitchell's Journey

Because his leg muscles had wasted away, Mitch had trouble walking around the uneven terrain. He tripped and stumbled a few times and he was much slower than the rest of the children. I couldn’t help but notice the look on my son’s face as he saw other kids race past him. He had a look of gratitude and determination. At one point he just smiled and said to me, “Dad, I’m just glad I can still walk.” 

After a lumbering about the pumpkin patch for a while, we each took turns giving our boy a piggyback, so our little boy’s legs could rest. Though he was getting bigger each year, carrying him was never a burden but in fact a great blessing.

Halloween was just around the corner and I wondered what my boy wanted to do. Each year, trick-or-treating became more and more difficult. In the beginning, he used his electric scooter to go from home to home. As each year passed his muscles became weaker and trying to climb up a neighbor’s stairs to knock on their door was exhausting for him. The year prior to his last Halloween, he just parked on each drive way and Luke or Wyatt would take his basket and trick-or-treat for him. That wasn’t much fun for Mitch because, like so many other children’s activities, he sat on the sidelines and watch the party from afar. No matter his disappointment or wanting to do what other children did, Mitch bore his burden with a tender smile - grateful to be alive.

So, as I carried my son on my back this warm October evening in the Pumpkin patch I asked Mitch what he wanted to be for Halloween. He said, “Dad, I just want to stay home and give candy to other kids.”

“Are you sure Mitchie? I will carry you door-to-door if you want.” I replied. 

He responded with a soft whisper, “No, I want to stay home with you. Plus, I like giving to others more.”

True to his word, Mitch stayed home Halloween night and handed candy out to other children. Each time he shut the door he had a big smile on his face. Giving to others brought more joy to little Mitch than getting ever did. Although his Halloween bag was empty that night, his heart was overflowing. So was mine.

To our surprise, later that night, thoughtful friends knowing he was too weak to trick-or-treat brought him some of their candy. 

Though Halloween was different that year, in every way that matters, it was a happy Halloween.

In honor of my son, I will look for those whose bags are a little empty and try to fill them with love and encouragement. Where I can, I will try to carry those who stumble, though I often stumble myself. For the key to happiness, I’ve discovered, is found in giving, not getting.

AT THE HEART OF THINGS IS EVERYTHING

Mitchell’s cardiologist placed a stethoscope gently on his chest. Suddenly he closed his eyes and disappeared into a state of deep meditation as he listened closely to the fumbling, tumbling sounds of our little boy’s failing heart. There wasn’t much time left and this doctor knew it. Unaware of his fate, little Mitch just wanted to go home. At the end of the day, I believe that’s where our heart yearns to go. Home. Back to that time and place where we felt safe and surrounded by the ones we love. 

Just a few days prior this same cardiologist, fighting back his tears, told us our son only had days to live. This good man spoke to us as a medical professional first and as a father second. The doctor in him told us the medical truth bravely and unfiltered – which we wanted and desperately needed. The father in him told us what he would do if he were in our situation. As far as I’m concerned, he practiced perfect medicine – for he was professional and human.

I cannot get this image out of my mind. I have many such photos of this doctor performing this same act of listening to my son’s heart – each time with the same degree of intensity. 

In this image is a metaphor that I can’t put away. Little Mitch once said to me while dealing with a hard thing someone had done to him, “Dad, if you see with your heart, you see everything that matters.” Mitch instinctively knew that old adage “hurt people, hurt people.” Someone was mean to him, yet he didn’t see a mean person, he just saw a good person who was broken and hurting on the inside. Listening to the heart and soul sometimes takes just as much focus and intent as this good doctor applied to my son’s physical heart.

I don’t know that I’ve ever shared this, but my son was named after a dear friend of mine who unexpectedly passed away several years ago. One night, over 20 years ago, my friend and I were in the heart of Kentucky. I remember that night like it was yesterday … the sky was clear, the stars were bright and there were fireflies nearby. We were talking about things that changed us from the inside out. We were only 19 and 20 at the time, but we had already experienced a change of heart that was significant and we were sharing our experiences. He shared with me something that changed everything for him. In high school he was rebellious and did everything his parents told him not to. One night, well after midnight, he smashed through the front door drunk, high, and belligerent. He then passed out and fell down the stairs and on to the basement floor. The next thing he remembered was his father holding him at the foot of the steps, weeping and telling his son how much he loved him. It was his father’s act of love and compassion that changed my friend for good. When Mitch told me this story, we both wept and discovered a spiritual truth. 

Over the years, time and circumstance created distance between us. We attended different universities and our lives did as they must … go on. But I never forgot my friend. So, on that fateful day my wife and I had our 3rd child, we named him Mitch because of what this good man taught me about love and compassion. I finally reconnected with my friend a few years before he passed and told him how we named our son after him. He was humble and kind and I was reminded of the kind of person I hope to be.

I wonder how the world might change if everyone started to see and listen with their hearts. That’s not to say we become illogical and foolish, driven to-and-fro solely by emotions; but how might things change in our own lives if we truly listened to the intent of others? I can say with confidence that almost every single conflict I have been a part of stemmed from a misunderstanding of the heart. Most people aren’t bad, they’re just a little broken and don’t know what to do with their jagged pieces. 

It is my experience that people change because they are loved, not because they are shamed. I hope to follow my son’s example and see (and listen) with my heart – for when I do, I see everything that matters. 

That’s what Mitch taught me … at the heart of things is everything. 

BARE FEET & BROKEN BONES

I think that nightmare scenario crosses every parent’s mind at one point or another and we ask ourselves: “What would I do if I lost my child?” In every way that matters, we are asking ourselves what would happen if we lost part of ourselves – for that is what our children are to us. That’s what our children will never understand until they have children of their own: they become more important to us than we are to ourselves.

Just after we were told Mitch had days to live, Natalie’s mother and father came rushing to the hospital to offer love and support. Over the next few weeks, my wife and I would keep the knowledge of our son’s impending death from Mitch. Peace of mind and childhood was our gift to our son – at least for a little while. You see, we didn’t know if he was going to die in an hour, or a day, or in a month and we wanted to help Mitch make the most of what time remained. 

I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.
— Christopher M. Jones | Mitchell's Journey

Palliative care workers circled our room and visited daily asking for permission to talk to Mitch about his death. Each time we told them no. Knowing our time with Mitch was short weighed heavy on our souls. We hid our broken hearts behind a soft smile and we put away our dashed hopes and shattered dreams under a blanket of hugs and loves. Though we didn’t know how to protect him from death, we could protect him from worry and fear. And that is what we tried to do. That was all we knew to do.

When these good parents arrived, Natalie and her father found an empty room in the cardiac intensive care unit. A curtain was drawn and a tender conversation between a daddy and his little girl ensued. Tears of deep grief and anguish fell to the earth. I wonder if the heavens wept just a little that day – not out of sorrow, but empathy. I don’t know what they talked about. I only know that empty room became hallowed ground between a good father and his little daughter. 

I stayed with Mitch and his grandmother in his CICU room. My mother-in-law is as good a woman as there ever was. Her heart was broken for Mitch and her daughter and our family. I’ll write of her another day.

After some time had passed Mitch asked me to get Natalie. When I went to get her I stumbled into a most tender and beautiful scene. I saw a good father embrace his daughter as she wept. In her trembling hand was a pamphlet about how to talk to your child about death and dying. That impossible scenario we couldn’t imagine living suddenly became a harsh reality.

When I saw my wife and her good father I sensed something similar between our Father. I thought of those times I knelt by my bed with bruised knees pleading for a way out for my son; the nights seemed to stretch out into infinity as I wet my pillow with tears. I felt the words in my heart, “I cannot take your troubles from you, but I will walk with you and lift you when you fall.”

Somewhere out there lives my son. And when I see him next I will drop everything and I will run … boy, will I ever run. The heavens will weep once more – but this time out of joy – for a family will be reunited with their young, fallen boy.

When I think of my own children, two of whom are teenagers and my youngest now ten, I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.

STAR WARS WITH MITCHELL'S JOURNEY*

For those who live in the greater Salt Lake area, Mitchell's Journey is hosting a Star Wars movie event TOMORROW Saturday, December 19th at 3:20 PM. It will be held at the Jordan Commons theater in Sandy. We have invited a host of DMD families to come for free so they can enjoy the much-anticipated movie together. 

We still have tickets available for those want to join us. If you are interested, you can contact info@mitchellsjourney.org.

About 15 minutes prior to the movie (around 3:05 PM) we will show a short presentation with highlights of 2015: what Mitchell's Journey accomplished, what we did to support PPMD, MDA and some local families with DMD as well as other important milestones in our journey to help others. We will also share our plans for 2016. There will be a very special thing shared during this short overview that I can't wait for these kids to see.

It should be a great event in memory of Mitch and in aid to families who struggle to find hope. If you can, please join us.

I DON’T KNOW MUCH, BUT THIS THING I KNOW

My wife and I spoke to the student body of Riverton High School (in Utah) who has chosen Mitchell’s Journey as the charity they’re going to support this December. Natalie, who doesn’t enjoy public speaking, bravely shared her heart-felt gratitude to these remarkable students for the good they’re about to do. I admire this woman more than she knows. She is stronger than I am. Braver than I could hope to be. Every single day, she makes me a better me.

Speaking to this group of students was humbling. There were two assemblies back-to-back: each time the auditorium was filled to capacity with students anxious to support a good cause. There was a spirit of goodness in that High School; one I will not soon forget. I remember what it was like to be in high school – and I don’t remember anything like what I witnessed. This is a new generation of youth anxious to be about a cause bigger than themselves. They are noble, hungry to help, and filled with compassion.

For the next 18 days these students will sacrifice their time and energy during the holiday season to hold a variety of fundraising activities aimed at helping Mitchell’s Journey. Their student body president, Hannah Kartchner, reminded the students “Remember, it’s not about the money, it’s about the change.” At least to me, her words carried deep and profound meaning. She reminded me of the principle that it isn’t enough to go through the motions, but rather to let those motions go through us and change us from the inside out. This high school is enlightened because they know in the very act of giving they receive. They know that when they give from the heart, their hearts change for the better.

When it was my turn to speak, I felt as though I were already among friends … kindred souls who just want to help. I shared with the students what Duchenne Muscular Dystrophy does to children and its catastrophic outcomes; I then outlined how we plan to support PPMD, MDA and some local families with the money we raise. Finally, I shifted attention to the story of my little boy’s life and death. There were times it was hard to keep my composure. I miss Mitch and sometimes it is difficult to talk about him without getting emotional. He wanted so much to live … yet here I am, very much alive and hurting to have him back in my arms. I vowed the day I lost him, and I vow again today, to make his life and loss matter. I promised my fallen son to not waste another day of my life. Instead I promised to offer my heart and meager talents in the service of others. 

Mitchell’s Journey is not only about reflections on the past, it’s about the future, too. To take grief and sorrow and see what good it can do. I don’t know much, but this thing I know: when we enlist serve others our hearts will change and they will surely grow.

SO EMPTY, YET SO FULL*

It was an especially hot summer day when two mothers and 4 children walked into Pioneer Park, each with an arm full of gifts they were about to give away. Quietly they began placing all manner of toys throughout the playground. Each toy had a sticker attached to it with an invitation to play with and keep, signed Mitchell’s Journey. 

Cathy O’Grady, a follower-turned-friend from Boston, was in Salt Lake City and wanted to do something in memory of little Mitch. So, she purchased two carts of toys that included baseball bats, footballs, bubbles, chalk, soccer balls and other things kids used to play with before the advent of technology … before the age of digital isolation and endless distraction. 

She was kind enough to let me follow her and a friend, Tracey Langston, so I could take photos of their random act of love and kindness in memory of Mitch. Each of them wore a Miles for Mitchell shirt because they wanted to take my son with them. 

“Watch how parents will put their phones down and suddenly start playing with their children when they’re given a toy.” Cathy said. Sure enough, exactly as she described, I saw it with my own eyes. Parents who moments earlier were busy scrolling through never ending streams of Pinterest posts, social feeds, texts, emails and other things suddenly set their devices down and began to play with their children. 

I saw adorable little kids stumble into a lonely soccer ball, pick it up with curiosity and then show it to their parents as though they won a lottery. I marveled at how these small, inexpensive toys changed how people interacted with one another. As these anonymous gifts were discovered, the playground went from friendly to an excited frolic.

After these good Samaritans were done placing toys … when parents and children alike were playing with one another, I told Cathy how humbled I was by her act of kindness. As my eyes filled with tears … fighting back a wave of grief … I told Cathy something about little Mitch just before he passed away. As Mitch was facing the realities of his own death he wept and wept as he told me how much he wished he could be like regular kids. My soul unraveled and my heart fell to the floor as I heard my son describe what he wanted to do in “real life” but could not. “Dad, I don’t want to ride a skate board in a video game, I want to do it for reals.” Mitch sobbed in ways only a dying child can know. And my soul writhed. 

I told Cathy how grateful I was for the gifts she gave others. She didn’t just give toys, you see. These little gifts were a means to a much greater end. Cathy gave the gift of play. The gift of relationships.

So, on this hot summer day, never a swing set looked so empty, yet felt so full. I wanted my little boy to be seated there and was pained that he was not. I wished with all of my heart I could push him back and forth, long after the sun set. I wanted to play with Mitch and see his face and hear him laugh, yet he was forever gone. Instead, I saw other children and parents enjoy what I no longer had – and yet my heart swelled with gratitude for their happiness.

I am so grateful for people like Cathy and Tracey … who seek to build others up and serve with love. I wonder how the world would change if everyone gave freely and not want anything in exchange. Something divine happens when we love and lift … for the very act of giving is itself a supernal gift.

You can see more photos of this experience at the park on instagram.com/mitchells_journey/

You can also learn more about Cathy and the many other good works she is doing here: http://sofiasangelsfoundation.org/