Sharing ‘Mitchell’s Journey’

Mitchell Jones taught his father many things, and first and foremost was to be a parent and to be a father.

“I learned what it’s like to be a son or a daughter of God,” Christopher Jones, a member of the Church of Jesus Christ of Latter-day Saints, said. “I was a son, and I was a father to my son, and I learned how the Father in heaven loves everyone.”

The boy changed him, Jones said, when he had to look deep and hard into his own faith to find direction as he faced the knowledge that he was losing his own child.

Capturing moments

Mitchell Jones, 10, died March 2, 2013, of Duchenne muscular dystrophy (DMD). He left behind his parents, siblings, extended family and friends and more than 300,000 worldwide followers of “Mitchell’s Journey” on Facebook. Later this year, Jones will be releasing a book based on the essays he posted.

The father’s story of his son caught the attention of KSL5 News, an NBC affiliate in Salt Lake City, where the family lives. The 30-minute documentary, “Mitchell’s Journey,” won a 2015 Gabriel Award from the Catholic Academy of Communication Professionals. The award acknowledges “outstanding artistic achievement in media that entertains and enriches with a true vision of humanity and a true vision of life.”

The judges called “Mitchell’s Journey” a powerful and touching documentary about “a boy with a broken heart” that, through social media, helped change, heal and strengthen the hearts of others. They noted that “the messages flood the world with hope and provide comfort and direction for people of many faiths.”

Jones, a self-described entrepreneur, was an English major in college with a passion for writing and creating videos. So it was natural for him to be constantly filming and photographing his family.

“I took photos like I breathe,” he told Our Sunday Visitor. “My kids just kind of tuned it out, just kind of forgot that dad was always taking pictures, so the photos became more authentic. When Mitchell was diagnosed at age 3, I turned that camera on overdrive.”

On July 11, 2005, doctors told the couple that their son would be in a wheelchair within four to five years and that DMD would likely take his life by his mid-teens. The neuromuscular disease, almost exclusive to boys, is progressive and incurable.

Jones will never forget “the look of bewilderment” on his wife Natalie’s face that day. He tried to remain calm, but when they left the hospital, he sat on a bench that looked over the valley, and he wept.

“When you first have kids and they’re healthy, you take that part for granted,” he said. “I learned very quickly that I could not take my children for granted. With Mitch being sick, and with a fatal diagnosis, I realized that I had to take the moments more seriously. I realized that whether your child gets sick and dies or grows up and moves away, every moment counts. You have to really focus on the power of the moments. In the end, that’s all we are going to take with us, and that’s who we are. After I lost Mitch, I began to reflect on moments that I won and moments that I lost.”

‘Just trying to be a dad’

During Mitchell’s illness, Jones started writing about those moments in a journal that he made for his family, and his Facebook postings went viral.

“I was just trying to be a dad to my son,” he said.

Mitchell Jones was an inspiration to many thanks to his father's online posts. Courtesy photo

Through his eyes as a father, he inspired others to embrace and believe in the moments that matter and to be clear on one’s values “and what’s truly at our core,” he said.

Jones and his wife have three other children: Laura-Ashley, 17; Ethan, 16; and Wyatt, 10.

The family tried to give Mitchell the ordinary life of being a little boy. He went to school, he played with his friends, and he went skiing with adaptive equipment. He smiled and lived life to the fullest knowing that something was not right, that he wasn’t like other kids, but not knowing that his days were numbered.

Mitchell had plans and dreams, and in his innocence, he envisioned a long and bright future. He wanted to build a home next to his parents with a connecting tunnel so that he and his dad could make popcorn and watch movies together. He wanted to work with his dad, and he wanted to be a father, too, and raise his children like he was raised.

Heartbroken, Jones and his wife felt like they were sitting with their son on an invisible cliff and that the abyss was inching closer to taking him.

Most children with DMD live into their late teens or early 20s. But in November 2012, when Mitchell was 10, the specialist disclosed that his heart was prematurely destroyed and that he was at risk for instant death.

Mitchell had chest pains on Jan. 22, 2013, and he was afraid.

“We didn’t know if we had 24 hours or 24 days,” Jones said.

They took him shopping to spend $200 that he’d saved. Ever frugal, he said that he’d spend just $40.

“He wanted only Lego characters, and he wanted to buy toys for his friends,” Jones said. “Natalie knelt down with him and said, ‘Just spend your money. This is the time.’ I was in the background crying my heart out.”

Mitchell’s 11th birthday was on April 29, but the family decided to celebrate it on Feb. 14. Toward the end, Mitchell knew he was dying, and from his family life and from Sunday school, he had learned to love Jesus and understood that there was life after death. He was courageous, his father said.

Jones and his wife slept on Mitchell’s bedroom floor. Jones drifted off around 1 a.m. March 2 but woke up to again tuck in Mitchell, who was barely breathing. “Don’t be afraid, everything is OK,” he whispered. “I love you, son. So much.” He kissed him and squeezed his hand, and lay back down. Natalie soon got up to give Mitchell his medicine and found that he had passed away.

Mitchell’s legacy

Jones wrote about “The Last Button,” watching his wife dress their son for the funeral. He wrote about grief and pain and finding “tender mercies” in looking up to the stars, not down to the darkness.

“While there are many today who have abandoned belief in God, we stand resolute with an absolute knowledge of Heavenly Father and Jesus Christ,” Jones said. “We have seen him work in our lives, warning us, preparing us and lifting us when we hardly have the strength to stand.”

Jones lectures about grief and healing, and through a parent group, advocates for awareness of DMD and support for research. He talks about parenting and the multiplying of love for each child.

He says that without question, being a father has been the most rewarding experience of his life, one that he would not trade for all the riches in the world.

“During this journey, when Mitchell was still with us, I was just a dad trying to sort things out,” he said. “After he passed, I connected with other fathers all over the world, and there are so many out there who can’t find the words to describe how they’re feeling. They’re hurting, just like me. I am also in touch with fathers who just want to be better dads. They want to figure this out and make good memories.”

Jones noted that he has “tremendous respect” for the Catholic Academy’s mission to “celebrate all that’s good in the world.”

“That’s how I feel about my journey, that we have so much in common with just about everybody,” he said. “I talk to all kinds of Christians, and those who are not. We all love our families, and we all believe that someone up there cares for us.

“We might understand it somewhat differently, but we all feel the tender mercies and that God cares about us. It’s about faith. It’s about family, and it’s about keeping what I learned in my heart.”

Maryann Gogniat Eidemiller writes from Pennsylvania.