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.

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TO MY GREAT SURPRISE

I remember how playful my children were at this moment and how much they loved their mother.  We were at a reunion and every family was back in their hotel rooms to rest a little.  As a Dad, my heart swelled when I saw our kids laugh and kiss Natalie’s cheeks to let her know how much they loved her.  This was an emotional payday for my sweet wife and best friend – and my soul smiled, glad to see her cash in a little on all the long nights and thankless days.  I was glad to capture this sweet exchange because this was one of those perfect moments that can slip through your fingers like the finest sand.  On the darker days, these good times remind me that not all of life is bad.

Somehow, some way, if we’re patient, and if we seek to find meaning before we seek peace … we’ll heal faster and hurt a little less.
— Christopher M. Jones | Mitchell's Journey

As far as I can tell, I believe one of the hard truths about life is this: things don’t always turn out well.  And sometimes, things can go terribly, horribly wrong.  Bad things can, and probably will happen to us.  If we live long enough, our hearts may be broken many times and we might suffer a great deal over the years.  But between all those hurts we’re going to experience many, many happy times. 

I still miss my little boy and I’m still grieving – but I think I’m entering a new stage of grief – that is the stage of deep acceptance.  When I think of the stages of grief, I don’t think I ever experienced anger – only great sadness.  Maybe I did experience anger … but I don’t ever remember being mad at God – only very, very sad.  I could have filled an ocean with my tears.

On my grief journey, I often wondered what acceptance would mean to me.  I think I’m beginning to understand.  At least for me, I’ve learned to accept I will forever miss little Mitch.  I accept there will always be an empty chair at the table of my heart – and I’ll long to see it occupied.  I accept that I now live with chronic [emotional] pain.  Yet, pain, like every emotion, has its time and place.  The emptiness is always, but the pain comes and goes – as does joy and peace.  As time progresses, the peaks and valleys are less intense.

I think about Mitch daily – sometimes I cry, other times I smile, and increasingly, I giggle over the cute things he used to do. 

I’m beginning to discover something about what can happen to the wounds that cut us so deeply.  Somehow, some way, if we’re patient, and if we seek to find meaning before we seek peace … we’ll heal faster and hurt a little less.  To my great surprise, these terrible wounds are turning into soft, peaceful memories – and fewer tears fill my eyes.

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Stories on Mothers*
Mother's Day 2018.png

For Mother's Day, enjoy select stories on Motherhood.

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WHEN THE TIME COMES

WHEN THE TIME COMES

Recently, our family went on a short trip to spend time together and heal a little.  On the drive home, we saw a spectacular sunset, and I couldn’t help but think of little Mitch and his love of atmosphere and beautiful evening skies.  At that moment, I was overwhelmed with feelings of love and gratitude, peace and grief.  I wonder if I’ll ever get used to feeling so many things at once.

If you remember only one thing from this post, remember this: our loved ones understand everything we feel.
— Christopher M. Jones | Mitchell's Journey

As Natalie was driving, I took a photo of my two favorite things … sunsets and my sweet wife.  How I love this woman and the goodness that is in her.  Whenever I’m with her, I am a better me.  A heavenly gift I don’t take lightly.

In this same moment, memories of little Mitch wrapped around me like a blanket, woven with feelings of the softest thread.  For a few moments, it felt like I was being smothered in Mitchell’s love.  Tears filled my eyes as I allowed those feelings to wash over me – and that, too, was healing.  I couldn’t tell if Mitchell’s spirit was nearby or if I was simply reveling in the love I have for my son.  Either way, I was grateful for this moment of supernal peace.

After a few minutes, I began to realize night was soon coming, and I wondered if my night terrors would return.  I now recognize that I suffered from a form of PTSD and had no practical support to guide me through the process of healing.  I just learned to write it out, here on Mitchell’s Journey.  Only recently have I not been afraid of the night – those moments between sleep and consciousness; where the rawness of loss would cause me to wake in the middle of the night in a heartbreaking panic, then I’d weep until I could hardly breathe.  I am grateful that no such nightmares visited me that night, as they have so many times before.  I think, for the most part, that part of my grief journey is over.  Even still, those nightmares visit me from time to time – and it is as though I lost my son all over again.

What I’ve discovered on my grief journey is moments of peace will come when I least expect it.  Then, in like manner, the terror of loss will take me to my knees.  Between those opposites, I also experience everything in between. 

At least for me, I’ve discovered something that helps along the journey of grief … and life for that matter.  I’ve learned that when the time comes, I’m better off if I allow whatever feelings I experience to take their course.  When joy comes, I embrace it fully.  I don’t feel guilty for being glad … instead, I’m glad that I’m glad. In many ways, that makes me even more glad.  When I’m sad, I don’t brush it away or pretend those feelings don’t exist.  The suppression or denial of feelings only serves to canker and become strangely malignant.  I suppose the only feeling I don’t entertain is hatred or anger – which, if left unchecked, poison the soul. 

Some people who grieve worry that feeling joy, peace or gladness is a betrayal of their love and loss.  That somehow stepping into a place that isn’t so painful is to step away from the one we lost and suggest no longer care for them.  That is simply not true.  We can grieve and grow at the same time or at separate times – and that’s okay.   Then there are some well-meaning, yet deeply misinformed people on the other side of grief who say foolish things like, “Be happy!  Don’t be sad; your loved one wouldn’t want you to be sad.”  That is blubbering nonsense.  If you remember only one thing from this post, remember this: our loved ones understand everything we feel.  They’re not disappointed in us when we’re sad – they understand how much we love and miss them.  When we’re happy, they don’t feel betrayed – but glad for our own gladness.

This night, as I saw my beautiful wife and the evening sky that brought my heart close to Mitch, I felt a potpourri of feelings and I allowed them, unrestrained, into my heart and soul.  It was both painful and beautiful.  Mitch taught me that when the time comes, face it … whatever it is.  He did that in life and in the face of death.  When he realized he was at his life’s end, he faced hard things with dignity and courage.  Though I stumble drunkenly in his shadow, I try to follow his quiet example … when the time comes, face it and embrace it.   

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