I DON’T KNOW HOW TO HELP, BUT I KNOW HOW TO BE A FRIEND

Every-so-often we’d take our kids bowling for family night. In my culture, that’s a long-held tradition of dedicating one night a week to spend as a family. On these bowling adventures, we always enjoyed getting a plate of nachos, a chili dog, and a basket of french fries. The food was never good. In fact, it was awful. But, to spend time with family always seemed to make up for terrible food. Mediocre nachos just taste better when you're giggling.

Heaven is never so close as when we’re with loving family and friends.  And when someone is going through hell, we can bring a little piece of heaven into their lives by simply being a loving friend.
— Christopher M. Jones | Mitchell's Journey

Surrounded by bad food and good company, we’d spend the next hour or two cheering each other on while competing for the highest score.

By this point in his life, Mitch wasn’t strong enough to hold a bowling ball, so family members helped by positioning the ball on an adaptive bowling ramp.  Mitch smiled as he squinted his eyes and slightly moved the ramp at just the right angle.  Then, softly, he’d push the ball down the ramp, and it would hurl down the lane.  When he’d get a strike, Mitch would chuckle as I’d blend sports terminology.   “Great!  You got a goal!” or, “Nice touchdown, son.”  Mitch and I shared a pocket full of inside jokes that always made us smile.

On this occasion, Natalie’s sister and her family joined our bowling adventure.  Mitchell’s closest cousin, Hunter, was always by his side, cheering him on – both bowling and in life.  At one point, Wyatt placed his hand on Mitchell’s back and said, “Nice job, Mitch!”  At this moment, I thanked my Father for the gift of family and friends.  I was especially thankful Mitch had a loving circle of his own.  Mitch was blessed with genuine friends.

Just today I had lunch with a dear friend and colleague.  He’s had a blessed career, and I have admired his desire to serve others with his good fortune.  About two years ago, however, he experienced a tremendous personal hardship that broke his heart and shook his soul.  During his darkest hours, I remember praying fervently that he would find a measure of peace each day as he learned to walk his own journey with grief.  As we were catching up on each other’s lives, he shared something a friend told him during a moment of darkness, and I learned a beautiful lesson.  His friend said, “I can’t imagine what you’re going through.  I don’t know how to help … but I know how to be a friend.”

When I heard that tender phrase, I was overwhelmed by its power and simplicity.  It’s another way of saying, “I want you to know I care.” 

Those are beautiful, healing words: “I don’t know how to help, but I know how to be a friend.”  It acknowledges the uniquely difficult journey of the sufferer while offering a shoulder to lean on, a listening ear, and an understanding heart. 

Heaven is never so close as when we’re with loving family and friends.  And when someone is going through hell, we can bring a little piece of heaven into their lives by simply being a loving friend.

So, when I look back on this tender moment with little Mitch surrounded by kids who didn’t know what to do, but knew how to be a friend, I’m reminded of the supernal goodness of children. 

I cherish this memory. 

When I feel grief cast its shadow on my soul, I scoop into my pocket of cherished memories and pull out little gems, like this moment.  They fill my heart with gratitude, meaning, and purpose – which, combined, serve as a lamp unto my feet when the path grows especially dark.  Today I was reminded of another gem to serve a broken heart: that to be a friend is one of heaven’s healing arts.

IN TIME

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me.
— Christopher M. Jones | Mitchell's Journey

I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”

I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries. 

When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.

Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.

There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013) 

In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot. 

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. 

In time, I will see.

WE'RE JUST WALKING EACH OTHER HOME

There is no single photo that encapsulates what happened today at our Miles for Mitchell run. We were humbled by everyone's support and loving encouragement. Though we run in honor of Mitch, we also run in hope for other boys with DMD. Today we had 11 children, each with DMD, attend. Each child left knowing they were loved by a growing community who cares and wants to help.

In this photo, Natalie talks with a dear friend of hers who also has a son with DMD. Our little Mitchell was friends with her son, who is also named Mitchell. Two DMD mothers who love their sons and carry uniquely heavy burdens, yet they set their sorrows aside to love and support each other. 

As I attended the funeral of my beautiful Aunt earlier this week, a woman who loved little Mitch and was there to support him during special times in his life, I discovered that she often said of life, "We're just walking each other home." 

May we walk each other home with helping hands and loving hearts.

Thank you to everyone who supported our event. It was a beautiful day.

 

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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.

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. 

A LABOR OF LOVE

Last week, on the 3rd anniversary of our son's passing (the very day, in fact) we received a package at our door. With trembling hands, we opened it only to discover a cross stitch of our son patterned after one of our very favorite images of Mitch. Meticulously woven by different colored threads, it looked like a photograph.

A compassionate follower-turned-friend gave this to us as a labor of love and a token of her affection. I remember first becoming aware of her when I saw her post photos of her family wearing#milesformitchell t-shirts as they participated in our virtual runs. They would make hand-drawn posters and gather as a family to take pictures, expressing their love and support. I was so humbled by her love made visible.

So, when Natalie and I had the pleasure of finally meeting Vanessa Bryson and her son in South Carolina when we gave a keynote at a conference a few weeks ago, I felt like I was seeing a long-lost family member. She was just as loving and kind in person and she seemed online. 

A day prior to this package arriving we received a smaller package that contained a loving hand-written note, a few first place ribbons she won at a competition along with the proceeds of her winnings to be used for flowers at Mitchell's headstone. My wife and I wept over her incredible gesture of love.

This beautiful work of art ... this love made visible ... will hang in our home as both a reminder of our son whom we miss so much and the amazing people that live on this planet; people who care enough to reach out and love complete strangers. Thank you Vanessa, for your love and friendship and for being such a tender part of our healing journey.

A LITTLE ON THE INSIDE

At the end of my days, when I kneel before my Father and account for my life, I hope He looks upon my efforts in the same way I try to look upon my children … with a heart of compassion, pleased with effort and personal growth over the illusory achievement of perfection.
— Christopher M. Jones | Mitchell's Journey

Parenthood has become the most difficult yet rewarding experience of my life. I wish I could say I did it perfectly, but I didn’t … and I don’t. Nobody really does, I suppose. Anymore, I don’t try to be the perfect parent … I just try to be loving and kind … to be the father and mentor I wish I had growing up. It is difficult at times, because I don’t know what to emulate – so I just try to be what I never had. 

At the end of my days, when I kneel before my Father and account for my life, I hope He looks upon my efforts in the same way I try to look upon my children … with a heart of compassion, pleased with effort and personal growth over the illusory achievement of perfection. 

When Mitch came home with a drawing or school assignment, I was always so proud of how hard he tried. I would hug him and kiss his face and tell him, “Great job, son. I’m so proud of you. Keep trying and you’ll better and better.” Always, there were imperfections in his drawings … but for him, he did it perfectly. Perfection is a relative term, for he was a young child and did the work of a young child. I didn’t care about flawless execution … at his age, I wanted him to be recognized for doing a little better than the time before. I wanted him to believe in himself and be proud of his accomplishments. As far as I can tell, belief-in-self is the bedrock of education and the scaffolding of character. At the same time, I am a strong believer in providing corrective feedback so that we might know where to stretch ourselves the next time. But, always, offering my children earned praise is high on my list of to-do’s as a father.

On this occasion my neighbor and friend, Jeff Winegar, offered to take our family to Snowbird so Mitch could participate in an adaptive sports program for kids with disabilities. Mitch was nervous about it because he knew he wasn’t very strong and that what little strength he did have would dissipate quickly. “What if I fall, Dad?” Mitch would ask me nervously. I assured him he wouldn’t be required to do anything for which he didn’t have the strength and that they had something special for him – so that he would be safe and have fun. Mitch sat in a small carriage attached to two skis. Behind him were two purple tethers which allowed an adult to ski behind Mitch and control his speed down the mountain. All Mitch needed to do was to lean right or left as he decided where he wanted to ski down the mountainside. 

I asked my friend Jeff to be on tether while I skied backward to take a million photos of my son. I loved looking at Mitchell’s expressions of glee as the cold wind rushed against his rose-colored cheeks. At first, I saw an expression that seemed to say, “This isn’t so bad. I’m not scared anymore.” Then later, his face seemed to say, “I’ve got this! I can do it!” I was so proud of Mitch and overwhelmed with gratitude as I saw my son’s countenance filled with a new form of self-confidence. He couldn’t race down the mountain like an Olympian, nor was he required to, but he could bravely face the steep slopes and do what he could, with the heart of an Olympian. That is winning, too.

I remember kneeling in prayer that night thanking my Father for giving my son such a great experience. I also thanked Him for giving me the blessing of children - a gift for which I'm eternally grateful. Because of Mitch, each day I try to grow a little on the inside, just like he tried. If I color a little outside the lines, I recognize it and try to do better next time.

Maybe that’s the point of it all … to get better a little on the inside each time. Musicians do it, athletes do it, academics do it … nobody achieves greatness in an instant … but through getting a little better each time. And those who have mastered their craft will each say it comes from within. It always comes from within. Each day. A little on the inside.