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.

WHAT FRIENDS DO FOR EACH OTHER

Wyatt's friend, Porter, injured his hip recently and cannot go out to play. So Wyatt strapped two bowls of warm macaroni and cheese to the back of his motorcycle and drove it to his home so they could have lunch together. When asked what he was doing he said, "I'm doing what friends do for each other." 

This is what life is all about.

OUR FIRST BOOK

Our first book is almost ready. I haven't settled on a title yet, but the story centers around Mitchell and his puppy and what happens when we give.

I hope to have the first edition at this year's #milesformitchell run on April 23rd. I'm also wrapping up a book [not intended for children] that is a candid, chronological story of #mitchellsjourney- I hope to have it ready by mid-summer. This fall we should have a book of photos and essays ready to print.

This first children's book will be part of a larger series aimed at younger children. At the back of every book will be at least one essay and photo that was the origin of the story. 

Hopefully, there'll be something for kids and adults.

The first edition will be limited because I want to get feedback from early readers about what worked and didn't work. I've never written a children's book before - so I have a lot to learn.

My hope is that when kids and adults read the stories they will try to implement something new and positive in their lives.

SILVER RUSH

Last Thursday my sweet wife stood before Riverton High School’s student body and thanked them for supporting Mitchell’s Journey. 

Natalie spoke on behalf of all mothers of DMD; she described how scary it can be and how she wants to help other mothers who see their child's fate and don't know what to do. When it was my turn to say something, I thanked them for their incredible example and for helping us help others. I told them I have seen a lot of things in my life, but I have never seen something quite like them. 

After our short address these students rose to their feet and clapped with thunderous applause. There was an energy in that room that was humbling and at the same time electrifying. It was clear by their energy something inside them changed – or perhaps, their true goodness was simply being revealed. To them it wasn't about the money ... it was about the change.

These students have raised the bar for humanity. This is the rising generation. A generation that cares.#SilverRush2015 raised $130,019 for Mitchell's Journey.

In the coming months we’ll share where that money is going. We plan to support PPMD, MDA, some local families as well as continuing to help with education and awareness. 

Above all, Mitchell’s Journey is about more than the disease that took my son's life ... is a journey of hope, help, and healing. 

 

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.

SWEETER THAN SWEET

My daughter took this photo on my last birthday with Mitch, October 2012. I remember this day … this very moment, as though it happened an hour ago. After the birthday party was over Mitch came behind me, like he so often did, and hugged me. 

I think we hugged each other 100 times a day. It never got old or routine – every hug was deep and heart-felt. I miss that deeply affectionate part of my son. I miss every part of him. Almost every morning Mitch would sit quietly on the couch and wait for me to go to work. I’d hear him say from a distance, “Mom, is Dad still here?” When he would see me, he would struggle to get off the couch because his muscles were weak … then come running in his awkward gait to give me a big hug. “I love you, Mitch.” I’d say in a soft voice. “I love you, too, Dad.” This little boy was sweeter than sweet.

So when Mitch came to hug me at this moment, it was really the only birthday gift I wanted. My family knows I’m not really interested in receiving gifts – I just wanted to be with them, for children is the greatest gift any father could ever have. Even still, each of my children chose a gift that was unique and perfectly … me. It’s interesting how a thoughtful gift is a gift twice. 

At the time, I wasn’t aware of the look on his face as this photo was taken; I can’t help but wonder if Mitch was having a faint sense time was short. I know he knew his life would be short – and I think this was about the time he knew he was running out of time.

As my birthday was approaching this month, Natalie asked me if there was anything special I wanted to do. I said, “I just want to spend time with you and the kids.” And that’s just what we did. Yesterday was a beautiful day. I posted some of those photos on Instagram.com/mitchells_journey

There are so many complex layers to grief and healing. Yesterday was filled with peace and joy … yet I still had a private moment where I wept. It didn’t last long, but I wept hard. On balance, I feel happiness and peace in my heart regularly – and for long periods of time. There was a time in the beginning I wondered if that day would ever come – for the gravity of grief made even breathing difficult. That is not the case today and I’m grateful for this. In many ways, I think it is safe to say I have moved on. But the truth about grief and longing is that it still goes with you. You don’t leave grief behind – it goes with you … only it has less power to take everything from you.

Each day I am learning to take happiness and joy back. Yet I know deep sorrow will be my quiet companion the remainder of my days. I suppose that stark contrast makes moments of joy I feel in my heart all the sweeter, for I have come to know the bitter taste of tears.

One day, in that place beyond the hills, Mitch and I will hug each other again … and I will flood the earth with my tears. Only this time my tears won’t be born of sorrow. On that day when we shall meet, my tears will come from a place of love and healing and they will be sweeter than sweet.

Until that day my boy and I shall meet ...