DR BUTTERFIELD

Today I visited the University of Utah Clinical Neurosciences Center.
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Meet Dr. Butterfield MD, PhD. He is focused on helping children like Mitch, who have DMD and other neuromuscular diseases. I was immediately impressed with his depth, intelligence, and empathy. We covered a lot of ground. We discussed the complexities of science, emerging medicine, clinical operations, and the deeply human dynamics that affect patients and their caregivers. (and all along I thought being an entrepreneur was complex...)
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While I’m interested in the science that will save children, I’m equally interested developing tools that can equip families and individuals to better cope with the inevitable holocaust of life’s hardships, whether from DMD or other life traumas. I not only want to prolong and improve the quality of life, I want to help people make the most of the life they have.
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I’m excited to get to know this doctor and his clinic better over the coming months and years. I’m also excited to serve on the board of #PPMD and help where I can. I have deep admiration for Pat Furlong and her staff.
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As I sort out my place in the universe, and what life looks like in a world without my son, I’m discovering ways #mitchellsjourney might contribute to the larger narratives of science, humanity and family relationships that are unique and deeply human.

MITCH & MARCO

Today we filmed the first part of a documentary on Marco Simmons, an undefeated MMA fighter who competes in memory of Mitch and in hope for many children across the world who suffer from DMD, a catastrophic muscle wasting disease.

We were so inspired by Marco, his remarkable family and the people he surrounds himself with.  This is going to be an inspirational story we can't wait to share.

Register with our new website, mitchellsjourney.org to get updates and special access to some behind the scenes footage.

WHEN TIME RUNS OUT

I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.

On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.

Neither of us knew he had 48 hours left.

Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.

I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.

Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission. 

Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down. 

Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out. 

You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.

At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.

 

ON GRATITUDE

Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.
— Christopher M. Jones | Mitchell's Journey

We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs. 

Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.

He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life." 

I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.

I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong. nWhatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.

He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see see will come from the light within.

Gratitude not strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.

 

ENLARGED OUR HEARTS

Last week, while attending a #ppmd conference, Natalie and I met several families with whom we discovered an instant bond. I gave this young boy, Logan, one of Mitchell's medals from our annual#milesformitchell run. I wanted him to know that he was remarkable and that I admired him. He was such a sweet child and reminded me of my son. I was also grateful to have met his parents, who were as strong as anyone I've ever known. I only wished there was enough time to sit down with every family and learn their story.

Losing our son didn't just break our heart; strangely, it enlarged it. Since then, we have learned to love others and empathize in ways we never imagined. The further I head down#mitchellsjourney the more I'm beginning to realize that we may not be able to save lives, at least tomorrow, but perhaps we can help save families. For if we save a life, yet lose our families, we may have won a battle but will have certainly lost the war.

MAKING PEACE WITH PAIN

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.
— Christopher M. Jones | Mitchell's Journey

I don’t have many photos of Mitch with me – which makes the precious few I have all the more special. Most of them aren’t in focus – but I don’t care. I’ll take anything I can get. 

Whenever he was close to me, Mitch would lean his head into my arm, shoulder or chest as if to cuddle any way he could. I know he felt comfort around me – but I don’t think my son had any idea the comfort I found in him. I still long for that comfort.

By the time this photo was taken, we were informed Mitch had days to live. I was so sad about losing my son that I cried everywhere but in front of him. My eyes always seemed to sting, as if I were swimming in chlorine. Every waking moment, my chest felt like it was covered in a lead blanket, my lungs felt shallow and breathing seemed vaguely sharp and painful – for the hours-upon-hours of weeping took its toll on my weary body. Sleeping was impossible. And when I finally found sleep, I wasn't sleeping; I was just passing out. 

I remember teaching little Mitch how to walk as a toddler. It was hard for him because his legs were already weak – but he would hold my fingers with his baby hands and he gave it all he had. I remember listening to his tender voice as he read children’s books to his sweet mother. He tried so hard to be a good student. With vivid detail, I remember watching his chubby little hands grip crayons and work so carefully to color within the lines. As he grew a little older, we tried to teach him that one’s beliefs don’t make them a good person, but their behavior does. Mitch embraced that philosophy. Before he died, we asked him what advice he would give the world. He said this exact phrase, “Be nice to each other and be glad you’re alive. Nothing else matters.” In a tender moment, this small child became a giant; the student became the teacher. I will spend the rest of my life trying to live up to those tender words from a little boy who did just that.

We spent almost 11 years trying to teach our son how to live. Suddenly, we had to teach our son how to die. Nobody ever taught us how to do that and we were terrified beyond measure. As this little boy came to know his fate, the real giant emerged. Though small in stature, he was towering in spirit. 

I have seen a lot of material over the last few years about grief, death, and healing. Some say death is nothing at all – as if to suggest we needn’t trouble ourselves with sorrow over the death of a loved one. Others say our child is just around the corner, as though we might suddenly find peace in such a notion. 

The loss of a child isn’t nothing. To the contrary, it is everything. What’s more, around what corner can I walk? What room can I enter to see my child and hold his hand once more? There is no such room, no such visiting hours. Though I have had spiritual experiences that show me my son still lives and that there is life after life, I still miss my son. I miss the way I used to have him. I miss his voice and his tender ways. I miss the ordinary days. 

Though I understand what those writers were trying to say, I believe some of that prose can cause the sufferer, especially those new to grief and even those who have suffered long with grief, to wonder if something is wrong with them; that because they still hurt, perhaps they’re not grieving right. 

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.

Grief is a long, long road. As far as I can tell, I will live with grief the remainder of my days. Through that sorrow, I am learning Heaven’s strange and mysterious ways. And with each tender lesson from my Father, I am beginning to make peace with my pain. I accept that somewhere deep inside me, there will always be a little rain. That is making peace with pain.