Mitchell's Journey Videos

As Mitchell's health began to decline, his father began creating personal videos of their experience. He would then post those short videos on Facebook as a means of sharing their family's journey, along with the thoughts and emotions with each downward milestone. To him, it was cathartic and a non-intrusive way of sharing with those who wanted to know what was happening.

Lights Will Guide You Home

This video was posted days after Mitchell's passing that was a reflection of their longing for Mitch and the way their lives had changed.

On March 2nd, 2013, our sweet son passed away from acute heart failure as a result of Duchenne Muscular Dystrophy. This is a short memorial to a boy whose broken heart has touched tens of thousands of lives across the globe. The purpose of Mitchell's Journey was originally to help close family and friends keep tabs on developments with his heath - but it has turned into something much larger than we expected. Within his journey you'll find a candid, intimate and often unapologetic look at the human cost of muscular dystrophy. Mitchell's Journey is not over. Not by a long shot. Mitchell's Journey will continue to tell his story of bravery, generate awareness, and help others who struggle find hope, faith and courage to face their own challenges. www.facebook.com/mitchellsjourney During our time of profound crisis, The Parent Project MD came rushing to our aid to help save our son's life. Because they fought for our son, we stand to fight for them and their cause. To those who want to fight muscular dystrophy with us, please visit. www.parentprojectmd.org

SPARK

This video was made the summer after Mitchell's passing and includes photos and video from people across the world who were moved by Mitchell's life and death.

BE THE SPARK I had a dream one night. A spark. And this is what followed. This short video outlines our son's fight to live. It also puts forth boldly the idea that sparks can be powerful, but it's what we do with those sparks that matters in the end. A flame without fuel, a desire without doing, a belief without action ... means nothing. Mitchell's Journey has served as a human spark … awakening in tens of thousands of people across the world a renewed commitment to faith, family and humanity. This was something we never anticipated. In fact, the overwhelming majority of followers are not afflicted with any disability at all - suggesting there are often more than broken bodies that need mending. On some level we are all broken. And perhaps through Mitchell’s Journey people are finding meaning and purpose with their own struggles. Mitchell’s Journey has also become a beacon for Muscular Dystrophy awareness. And while there are miles to go and mountains to climb in the fight against this fatal disease, Mitchell's voice and story are being sounded from the mountaintops ... and people are listening. What's more, people are doing something about it. Wherever you are, whatever you do, be the spark. Be a beacon for love and goodness. Be a force for action. Our sincere hope is that all who have been touched by Mitchell's Journey will not only feel the spark, but do something about it ... to join the fight against DMD and to find a cure. Because life and love are worth fighting for. I would do anything ... anything ... to have my son back with me. I fight for life. I fight for love. www.facebook.com/mitchellsjourney

The Greater Symphony

THE GREATER SYMPHONY I made this video last night to help the student body of Riverton High School catch the greater vision of Mitchell's Journey. These students are helping Mitchell's Journey raise money so we can help other families and I wanted them to understand a loose sketch of the disease and most importantly the human impact of DMD. In this video you'll hear and see Mitch say in his own words he was grateful to be alive. As miraculous as the human body is, with billions of cells working together as if choreographed to a most beautiful symphony ... perhaps the greater symphony isn’t found in our bodies but how we work together as a human family. Family and humanity: that is the greater symphony. instagram.com/mitchells_journey

Mitchell's Last Days

WHEN THE LIGHTS GO OUT, AS THEY SURELY WILL The content in this video chronicles some of Mitchell's final days with our family including a tender final goodbye from one of my son's best friends, Luke. Lest anyone think this video shares too much, I've received permission from Luke and his family to share this sacred exchange. There are some things in life that permanently sear an image into our minds and souls ... watching Mitchell's best friend say his final goodbye was one such moment for me. I am a changed man Despite the darkness of grief and sorrow that may surround me at times, if I settle my mind and soul ... when I allow my spiritual eyes to adjust I begin to see tender mercies as if little flecks of light. What's more, so many of them are connected to each other. We are not alone in our suffering, not ever. This is my experience. This is what I know.

Meditations on Grief

Grief Rituals

In this short video essay, Chris explores grief rituals and the role they play in those who suffer loss to death. It is a meditation on what such rituals do to ease our minds and hearts. This video was shot and edited from a cell phone and is a bit shaky, but the point is what mattered.

Travel Well

Travel well explores a tender moment where little Mitch couldn't concentrate on building Lego's ... something he did with great ease before his heart failed. Because of low profusion, Mitch had difficulty performing the most simple of tasks. Travel well explores the thoughts and feelings of one who is left behind and the importance of grieving in a healthy and productive manner.

Tonight is the night I lost my son two years ago. I feel a strange blend of love and peace mixed with horror and grief. I didn't have much time to put this together - just a few short hours - but I wanted to make something in memory of my son who wanted to live. Mitchell's Journey has now become my journey in the same way any one of us might inherit something from those who have gone before us. We can inherit love or hate, fear or faith. Mitch taught me love and faith and the true value of time. You never know how much time you really have. We spend our lives chasing things of value, not realizing time has the greatest value. And its what we do with our time that matters most. Time is the road we travel. May we travel well.

Wastelands

Wastelands is an explorations on the aftermath of grief. Everything is uʍop ǝpᴉsdn

WASTELAND Last night Wyatt asked if I'd take him on a drive. I love spending time with him and gladly agreed. Wyatt said he also wanted to visit Mitch - something he doesn't often ask to do. We are careful to keep things positive and upbeat with Wyatt and allow him to grieve in his own way - and though I like to visit the cemetery often, I do not require my kids to go. Not knowing what Wyatt had in mind, I asked my wife to drive so I could take photos and film him. As we set out for a drive my sweet son put his head near the window and let the wind rush through hair. The look on Wyatt's face seemed to say he, like Mitch, appreciated being alive. As we drove through the desert I could tell Wyatt was thinking deeply about his brother and it occurred to me the journey for my family is far from over. When we arrived at the cemetery, Wyatt broke down. It is not wise to underestimate the trauma young children experience when their siblings die. This reality settled on me once we arrived at the cemetery and Wyatt's poor heart broke. I have learned you cannot protect your children from grief - but you can guide them through it. It never crossed my mind how difficult it would be to guide our children through their sorrows while trying to manage our own. I am speaking at Primary Children's Hospital in a few weeks to their medical staff about our perspective through the medical system as parents of a terminal patient. I am going to use an excerpt of this at the end of my address. I hope to show the human impact of modern medicine and that it reaches far beyond hospital walls - long after discharge papers have been signed and wheelchairs pushed to the curb. When medicine fails, the struggle survives long after those who don't. Before I know it, two years will have passed since we left the hospital with our son to die. Two years from the time medicine failed him. Little did we know our journey with grief hadn't even begun. I've traveled many long roads in my life - but none are so complex, so long, so barren, and lonely as grief. Everything is uʍop ǝpᴉsdn. Yet, even in the wastelands of loss and sorrow I have discovered moments of peace, hope and a depth of love I have never known. Like water to a thirsty traveler, I am finding those moments refreshing. And when I stop to appreciate all that I still have, and recognize tender mercies from a loving Father, I can see there is beauty even in the wastelands.

GRIEF RITUALS I recorded this little video earlier this summer with my iPhone. At the time I was thinking deeply about grief rituals ... why I did what I did and why others do what they do. After I arrived at the cemetery I dictated this narrative into my phone. It's rough and clunky, but its real. vimeo.com/111309673 --------------------------------------------- I don't know why we do what we do When we lose the ones we love. Each day I leave my neighborhood To visit my son. I know he isn't there, But somewhere, deep inside me, I want him to be. Each day, my ritual is the same. But the journey of my heart each day is NOT the same. Sometimes I am overwhelmed with peace of mind and gratitude. Other times my feelings get the best of me, And I panic As I draw closer to my son's place of rest My heart pounds and my blood races And I can't get to him fast enough. It's almost as though somehow, some way, I might be able rescue him ... Rescue him from the dark And hold him in my arms once more That's what the father in me yearns to do, To protect him from all that might frighten his little heart. But I know better and I'm trying to teach my heart What my mind already knows. But the heart wants what it wants. I suppose that's one of the reasons we have grief rituals, To train our hearts that everything will be okay. Some day. Such is the journey of grief. After all is said and done, The journey of grief is traveled by one. --------- www.facebook.com/mitchellsjourney

May Our Memories Keep Us

This video was given to Natalie on Mother's day and encapsulated some of their more tender moments with Mitch when he was living.

As I contemplated a gift I could give my wife to honor her this Mother's Day, my mind kept going back to the the gift of memory. Although memories needn't cost money, they are purchased at a price: with time and love. Always quick to give a memory before a thing, I dedicate this video to my sweet wife; a woman who has always invested her time, love and attention into her family. Of all the gifts we give and take, the ones of time and love the sweetest make. And when our hearts fail us in grief and sorrow, may our memories keep us.

Good Night/Goodbye

This short video contains a conversation between Mitch and his father, wherein Mitch says, "Dad, will you tuck me in?"

Every night, almost without fail, Mitchell would call his father to tuck him in. Here is a recording of one of the last times he asked me to tuck him in. Days later he would be admitted to the hospital for end-stage heart failure. From that moment on my wife and I almost never left his side. www.facebook.com/mitchellsjourney

Little Moments, Big Memories

Mitch loved life and was eager to explore the world, but for him a staircase may as well have been Mt Everest.

I am fascinated how the seemingly ordinary and mundane footage I took (almost without a moments thought) is so precious today: every image, every audio clip, every snip-it of video.

My memories of my son are without price. It feels like yesterday, but also a world away.

It’s funny the things we take for granted; the simplest moments back then have turned out to be my most treasured memories. For Mitch life was more difficult as compared to the average child. Walking was a burden made more difficult each year, as his muscles grew weaker. Mitch loved life and was eager to explore the world, but for him a staircase may as well have been Mt Everest. I am fascinated how the seemingly ordinary and mundane footage I took (almost without a moments thought) is so precious today: every image, every audio clip, every snip-it of video. My memories of my son are without price It feels like yesterday, But also a world away.

Simple Moments Matter

A short Instagram clip of Mitch riding 4-wheelers.

SIMPLE MOMENTS MATTER I have posted this video before on Mitchell's Journey, but today my mind and heart are flooded with moments like this. Mitch loved riding 4-wheelers. He loved to feel the rush of wind on his face and the feeling of independence he felt driving. But because his arms would get weak quickly, it wouldn't take long before he would sit with me and he would have me drive. On this day I strapped one of my cameras to the handle bars to get an idea what expressions on his face I was missing. Later that night when I saw his reaction to the wind on his face, my heart swelled. I loved spending time with him. One day, when my body is tired and my soul ready to leave this place - I will look back on simple moments like this and my heart will swell and my soul will find rest. It won't be the cars I drove, the places I lived or professional achievements that bring me fulfillment, it will be the love I shared and the time I spent with those that mattered most to me. I have discovered it was never the big vacations to exotic places that carry the sweetest memories ... it is the simple moments that mattered most. They are the ones I remember best. They are the ones that give my heavy heart and tired soul a little rest.

Not So Ordinary Moments

You never really know how valuable photos and video can be until the people you love are no longer with us. This was a short meditation on the value of memories.

There is so much more to this video than meets the eye; from Mitchell's awkward walk to his shallow breaths while home under hospice care, there are breadcrumbs that if you look carefully point to the devastating effects of Muscular Dystrophy. This video contains various clips from the last 12 months of Mitchell's life. I am so grateful we have always taken photos and video of our kids. The most ordinary and mundane aspects of our lives, once captured, are in reality the most treasured. When you stop and think about it, we never point to the times we posed for a photo as treasured moments, instead we yearn to remember everything else ... glimpses of the things we took for granted. The hugs, the giggles, laying on the couch upside down, drawing at the kitchen table, cooking dinner, and the smiles. It is so tempting to think that cameras are only for shooting special events - when in reality everything but the "event" is the most special. Like I said in my PPMD address, "Take photos. Take them like a paparazzi." You will look back one day and realize all that you captured were not so ordinary moments. The balloon release was at his grave-site on his birthday. www.facebook.com/mitchellsjourney

Sweet Dreams

A video chronicle of his first encounter with Mitchell's new puppy Marlie. This little dog would soon become a profound tender mercy during Mitchell's final moments.

Mitchell received a special gift from his grandparents. Medicine for the heart and soul. To learn more about Mitchell's Journey: https://www.facebook.com/mitchellsjourney

Going Home

Side note: with all of today’s modern marvels it’s ironic that microwaves don’t seem to cook fast enough. Despite their vast computational abilities, computers are always too slow. And no matter how incredible it is that humans can fly over 30,000 feet in the air, at speeds over 550 MPH . . . sometimes your flight home seems to last an eternity - especially when you have little ones you can’t wait to hug and to hold.

At any rate, if you’re the type that likes to look out the window during take-off, you may enjoy this. If you’re not, move along: it's a little bumpy and this will bore you to death.

While waiting for my plane on a recent return trip home, my kids left me some sweet messages on my phone. I decided to record the takeoff so they could see what I saw. This is a crude mash up of those two nearly simultaneous events. Side note: with all of today’s modern marvels it’s ironic that microwaves don’t seem to cook fast enough. Despite their vast computational abilities, computers are always too slow. And no matter how incredible it is that humans can fly over 30,000 feet in the air, at speeds over 550 MPH . . . sometimes your flight home seems to last an eternity - especially when you have little ones you can’t wait to hug and to hold. At any rate, if you’re the type that likes to look out the window during take-off, you may enjoy this. If you’re not, move along: it's a little bumpy and this will bore you to death.

Into The Abyss

A candid look at Mitchell's final days. This video depicts the fear we felt when facing the abyss of death.

WARNING: This is not an easy video to watch. With few exceptions this video contains snapshots of Mitchell's final weeks and chronicles his descent into the abyss of which I wrote in earlier essays. The timing of this video is important because it shows footage of Mitch at this time last year - and it was about this time last year Mitch started to slip away quickly. As hard as this may be to view, living this reality is infinitely more difficult. As the father of Mitchell, I don't get to close my laptop or turn my head and look away; I don't get to change the channel or unsubscribe from the heavy consequences of death. I wish it was as easy as unliking my Facebook page - that I could move on blissfully unaware. This is my harsh reality - and there is no running from it. My aim with this piece isn't to wallow in sorrow or be depressing but rather to put a distinctly human face to DMD and illustrate the heavy toll it exacts. Although my agony is great because I love my son with all of my heart and miss him terribly, I also realize our son wasn't the only child to pass away from DMD - and he won't be the last. Other families hurt, too. Reverently, I acknowledge them. To this end I made this video. My hope is through Mitchell's Journey others will see this disease for what it is, understand the profound price families pay because of it, and be moved to action and save other children and families the agony of such a loss. www.facebook.com/mitchellsjourney

5%

Less than two months after Mitch was denied a heart transplant [see video No Exit] we discovered his heart function declined significantly. His ejection fraction was 5%. Therapies failed him.

Yesterday Mitchell received an MRI to get a clearer view of the damage to his heart. As expected, major scar tissue ... and some additional news. https://www.facebook.com/mitchellsjourney

Facing the Abyss

An appointment with our cardiologist in October 2012 where we learned Mitchell's heart was failing at a rapid rate. It was believed aggressive medicines would slow the deterioration of his heart muscle. We were warned he was at risk of sudden death.

Here is a short video/photo essay of our visit with Mitchell's cardiologist. His heart condition has continued to deteriorate [much faster than normal] and new measures are being taken to stop what's happening. While Duchenne muscular dystrophy is 100% fatal, cardiac failure is the primary cause. Because the heart, too, is a muscle, and eventually it wastes away https://www.facebook.com/mitchellsjourney

Heart Failure

The ravages of heart failure are starting to take grasp of our little boy with alarming speed and intensity.

No Exit

When Mitchell's doctor denied our petition for a heart transplant. Citing antiquated policies governing transplant candidacy, Mitch faced certain death, although a heart transplant would have given him at least 10 years. There was no exit.

On November 21, 2012 we met with the transplant director and learned that Mitchell would be denied a heart transplant. This short photo essay shares some audio and photos of that difficult day. https://www.facebook.com/mitchellsjourney

A Broken Heart

This video was made the Spring of 2012, immediately after we learned Mitchell's heart was in jeopardy. At the time, we had no idea how quickly his heart would deteriorate. In less than a year, he would die of heart failure.

My son was diagnosed with duchenne muscular dystrophy in 2005. This video is a short summary of his recent loss. After a routine echo-cardiogram we discovered Mitchell's heart is showing signs of heart weakness not typically seen in kids with DMD until the later stages of the disease. The significance of this is .... breathing complications and heart failure is the most common cause of death in young men with DMD. The road ahead will be dark and dreary, but we will do our best to provide some light, love and hope on the path for our young boy who faces a certain and difficult future. https://www.facebook.com/mitchellsjourney http://the-jones-family.blogspot.com/2006/04/mitchells-diagnosis.html https://www.facebook.com/pages/Mitchells-Journey/192859897410346

A Message of Thanks

This was a message we posted to supporters of Mitch. We couldn't imagine that by the end of the month, little Mitch was admitted to the emergency room for end-stage heart failure.

We have been humbled by the love and support of family, friends and strangers from all across the globe. Here is a short message to all that follow Mitchell's Journey or are trying to make sense of their own trials. With gratitude, To learn more about Mitchell's Journey: https://www.facebook.com/mitchellsjourney

The Spark Continues

On our second annual Miles for Mitchell 5K, we made this video to signify the ongoing impact little Mitch has had in the lives of others across the globe.

ONE DAY Yesterday we had our second annual Miles for Mitchell 5K. I admit I approached the day sort of flinchingly because I didn't know if many would show up. We were so humbled by all that came in support of Mitchell's Journey. We have received many, many messages from people all over the world saying they were running in honor of our son from their home towns and countries. I wish it were possible to include everyone's photos. We will share them on the Miles for Mitchell page as often as possible. Although this Facebook page focuses almost exclusively on my son's journey I will share, from time-to-time, the echo of his journey in the lives of others. I don't know what is in store for Mitchell's Journey - but I sense it has more to do with the triumph of the human spirit than anything. My beautiful son's life ... his journey didn't end at his death - it has only just begun. Although I tremble and quake that he is not with me - not the way I want him with me - I pray to have the presence of mind and soul to listen and follow whatever whispers that would direct its path. For those who have supported Mitchell's Journey and Miles for Mitchell, we offer a heart-felt thank you. May we all be the spark that puts more goodness in this world - that we all might love a little more, help more often, and lift those who hurt. May we also be the spark to create awareness for Duchenne Muscular Dystrophy, the disease that took my son's life. I threw this video together rather quickly so it's a bit clunky - but it highlights what amazing people (sparks) have done all around the world (in memory of Mitch) as well as a bit of yesterday's run. Be the spark, so one day our children can play.

The Last Goodbye

What you see here is a side-by-side of the video given to him and my video of his reaction to it. I was sure to time the videos exactly so you can see his tender response throughout.

At ~1:06 Mitchell's teacher wished him well, then the camera cuts to his class who cheer for him. Mitch smiles on the inside and out. Mitch loved his teacher and she cared deeply about him. I have more to share about her in the months ahead.

At ~4:50 Mitch sees his former elementary school principle, Mrs Davis, offer encouragement and love. She is every bit as genuine and loving in real life as she is in this video - in fact, even more so. Mitch started to cry and then I started to cry. I couldn't help it. What you then see is a tender exchange between my son and I and the loving words of his former principle.

I haven't watched this video for at least a year and a half. Today I thought I was ready to see it again. I did not expect the torrent of tears that would flow watching it again.

There was so much love and kindness offered to Mitch by all of the remarkable school staff, volunteers and classmates. We are eternally grateful to those who reached out in love to calm his trembling heart.

Mitch watched this video Monday, February 25, 2013. He died Friday night.

Upon hearing Mitchell's prognosis, and being sent home from the hospital to die, his elementary school gathered together and made him a special video to cheer him up. As we watched the video as a family I grabbed my camera to film Mitchell's reaction as he listened to loving comments of hope and encouragement from those he knew and loved. What you see here is a side-by-side of the video given to him and my video of his reaction to it. I was sure to time the videos exactly so you can see his tender response throughout. At ~1:06 Mitchell's teacher wished him well, then the camera cuts to his class who cheer for him. Mitch smiles on the inside and out. Mitch loved his teacher and she cared deeply about him. I have more to share about her in the months ahead. At ~4:50 Mitch sees his former elementary school principle, Mrs Davis, offer encouragement and love. She is every bit as genuine and loving in real life as she is in this video - in fact, even more so. Mitch started to cry and then I started to cry. I couldn't help it. What you then see is a tender exchange between my son and I and the loving words of his former principle. I haven't watched this video for at least a year and a half. Today I thought I was ready to see it again. I did not expect the torrent of tears that would flow watching it again. There was so much love and kindness offered to Mitch by all of the remarkable school staff, volunteers and classmates. We are eternally grateful to those who reached out in love to calm his trembling heart. Mitch watched this video Monday, February 25, 2013. He died Friday night.