Posts tagged Enhanced Essay
OKAY, BUT NOT OKAY … AND THAT’S OKAY*


The funeral director told us it was time to close the casket and suddenly I gasped for air and tried to hold back my tears - but nothing could stay my sorrow. This was it. I wasn't ready to look upon my son for the last time – to say goodbye to his little body, his sweet face … this little boy I used to cuddle, hug and laugh with. My youngest son, Wyatt stood beside me and watched me in grief and sorrow tuck his older brother one last time.

I carefully pulled Mitchell’s favorite blanket up to his chin, like I did every night, and said “I love you little boy … my sweet son. Oh, how I love you.” I cried a father’s tears … and until that moment I had tasted no deeper tears. I had never known so great a sorrow as to say goodbye to my child. Sweet Mitch trusted that I could keep him safe from harm. He thought there wasn't anything I couldn't do. When he looked at me he saw superman. When I looked in the mirror I saw a broken man. But I tried. God knows how hard I tried. But I was only human.

“I cannot run from sorrow any more than I can run from my shadow on a sunny day. I must learn to live with love and sorrow – there seems no other way.”
— Christopher M. Jones | Mitchell's Journey

Months later, my oldest son, Ethan, came into my office while I was writing an entry for Mitchell’s Journey. I was unprepared for the interruption and my eyes were red and filled with tears. Ethan asked, “Dad, are you okay?” I immediately tried to be superman and put on a brave face, wiping my eyes and said, “Yeah, I’m okay” … as if to suggest all was well and that I was simply rubbing my tired eyes. But Ethan was discerning and knew better: I could tell by his expression he knew I was grieving.

In that moment I thought to myself, “What good do I do my children when I pretend?” I realized I do him no favors when I am not being real. I paused a moment then looked Ethan in the eye and said, “Actually, I’m not okay. But I’m okay. Do you know what I mean?” Relief washed over his face and I could tell he not only understood but that he was glad I was being real … as if it gave him permission to be real, too. I wanted my son to know that it is okay to hurt … that you can be “okay” but “not okay” and that’s okay.

Ethan and I talked about Mitch for a while and he shared some of his sorrows about losing his younger brother. We both cried together. I hugged Ethan and let him know how much I loved him – every bit as much. We crossed a threshold with grief that day. My son knew it was okay to hurt and that pretending otherwise serves nobody, not even ourselves. To the contrary, we do a great disservice when we pretend.

I had a moment of truth a few years prior when I read the words of an 18th Century French writer who observed, “We discover in ourselves what others hide from us, and we recognize in others what we hide from ourselves.” When I read those words I vowed to retire my masks and get real.

“We discover in ourselves what others hide from us, and we recognize in others what we hide from ourselves.”
— Marquis de Vauvenargues

I've tried to have similar exchanges with my other kids. My children, each unique, process their grief differently. And that’s okay, too. In all things I want to be real with them – for it is when we’re real that we become equipped to deal with real life.

I am still walking on Jupiter where the gravity of grief is great. The air is thin and my tears fall as generously as spring rains. Yes, I have moments of sweet relief and happiness is returning – but grief and sorrow linger. I cannot run from sorrow any more than I can run from my shadow on a sunny day. I must learn to live with love and sorrow – there seems no other way.

I’m okay … but I’m not okay … and that’s okay. That is part of being human.

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First posted on April 1, 2014. I share this again knowing somewhere out there are people who hurt and want to know that it's okay to not be okay.

Christopher JonesFuneral, Grief, Duality of Grief, Enhanced Essay Comment
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FEAR & COURAGE*

The door to my home office burst open with a big waft of air … “Chris, guess what?” Natalie said with a smile.  I was so startled by her sudden entry, I began to worry a pipe broke in our basement apartment and that our few newlywed belongings were being washed away.  “Is everything okay?” I said anxiously.  She paused, “I’m pregnant.” 

In that singular moment, I was overcome with two emotions.  On the one hand, I was excited because I always wanted to be a father.  At the same time, I was frightened and said to myself, “I am so inexperienced with life … am I ready for such a responsibility?”  Ready or not, we were going to have our first baby and it was up to me to rise to the challenge of fatherhood.  We were poor as church mice, trying to fight our way through college and full-time jobs.  I wouldn’t be honest if I didn’t say I was afraid of the future.  I was young and afraid. 

“In life or in the face of death, there are moments every human will shudder with fear … and somehow, some way, we must find a way to take up courage to face the things that frighten us. ”
— Christopher M. Jones | Mitchell's Journey

Soon our little daughter joined our family and my heart was spilling over with love. She was a most precious little girl and I loved seeing her personality emerge.  Over the next few years, I saw her become an independent, feisty and compassionate little girl. Ever since she came into my life, I have tried to fiercely protect her from people who might use or take advantage of her. My greatest desire then and now is to help her see her true worth – for I love her so. Thus began our family – under less-than-perfect circumstances and in many ways under a shadow of self-doubt and fear.

By the time Mitchell was diagnosed with DMD, Natalie was already pregnant with our 4th child, Wyatt. Fearing our newest baby might have DMD, a medical professional suggested we think about aborting our baby. We dismissed the notion wholesale because we valued life more than our inconvenience. What’s more, although Mitch was diagnosed with a fatal disease, his tender life was still worth living. For he found much joy in his life, and so did we.    

We were prepared to accept our baby no matter what physical challenges he might have. As mother and father, we would stand united and love our child with all we had. We were still afraid of the future, but we faced our fear with whatever faith and courage we could muster. That was the best we could do. I suppose that is the best anyone can do.

So on this day, I’ll never forget our newborn sleeping peacefully on the examination table as Natalie took on a most ponderous demeanor. This was the moment we would discover if Wyatt had DMD. She seemed to look upon him as if to say, “Sweet baby of mine, no matter how heavy the burden, I will carry you all the days of my life.” Such is the magic of motherhood.

A blood test would soon reveal Wyatt was perfectly healthy and fear retreated like the evening tide. That night, I knelt at the side of my bed and tearfully thanked my Father for my family. I was grateful Wyatt was healthy. I was also grateful we were blessed with Mitch, broken wings and all. Though I felt inadequate, I promised to do my best to be a dad and asked that He would somehow make up the difference.

Whether I’ve faced professional insecurities or deeply personal self-doubts, I have confronted my fair share of fear, worry, and discouragement. What if I ran from fear? What if I turned my back on fatherhood and abandoned my family when we discovered Mitch was sick? I would have missed one of the most profound blessings of my life. Everything that has ever scared me, when confronted, has made me stronger.

In life or in the face of death, there are moments every human will shudder with fear … and somehow, some way, we must find a way to take up courage and face the things that frighten us.

No matter how much I want to, I cannot know the future. So, when I face fear or the unknown, I try to remember the phrase “Courage is not the lack of fear. It is acting in spite of it.” Then, I do what my sweet wife taught me years ago, I take the next best step.

These are images of Wyatt having blood drawn to screen for DMD.

There is a profound story surrounding little Wyatt: an answer to prayers, his birth and his life.  That story is shared in our Tender Mercies presentation.

Christopher JonesCourage, Enhanced Essay, For Times of Trouble, MotherhoodComment
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NORTH CAROLINA*


Natalie and I just returned from North Carolina where we shared Mitchell’s Journey with the pediatric medical staff of New Hanover Regional Medical Center. We were so inspired by the incredible kindness and compassion of their staff, hospital administrators, and surrounding community. On this trip, we shared two presentations: What Happens on the Other Side of Medicine (for medical practitioners) and A Practical Guide to Making Moments Matter (for parents and caregivers).

“ That is what makes all of this journey worth it ... to see other lives blessed.”
— Christopher M. Jones | Mitchell's Journey

There is another side to Mitchell's Journey that isn't always apparent in our grief stories, and that is the practical, "I can do that!" guide to making moments matter. It was so fun to share that presentation on Thursday at one of their events. We shared what our family has done over the years to make moments matter and offered 6 ideas on how to turn ordinary moments into extraordinary ones.

Our hearts were overflowing to see parents come up afterward and express their feelings and personal discoveries. One young boy came up to me and said enthusiastically, "Do you know what we're doing tonight? We're having our first family night." He was so excited to spend quality, focused time with his mom and dad. I nearly broke down in tears. Other parents said they felt like they had an awakening. That is what makes all of this journey worth it ... to see other lives blessed.

Another woman, Stephanie Burney, also spoke. She’s a local mother who lost her daughter in a tragic zip line accident almost 2 years ago. That was her first time speaking to an audience about her tremendous loss and she did a wonderful job sharing the impact a medical community can have on the lives of families who experience any kind of medical hardship.

After our time with the medical community, we spent time with two gentlemen who own a funeral home (Wilmington Funeral & Cremation) that we were honored to meet last year at a different speaking engagement. These two men are some of the kindest and most compassionate people I’ve ever met. They introduced us to a family who lost their 19-year-old son to DMD a little less than a year ago. So, on our last night, we spent time at their home to learn more about their story. We were so inspired by their goodness. There are stories just like that of little Mitch, all across the world. I wish I could tell their stories of faith and courage, love and family. Perhaps one day. That would be a dream.

This has been a lovely, healing trip. There's something very special about the people of Wilmington, North Carolina. You may come into town a stranger, but you leave as friends. That's not their slogan, but it should be.

Day 1 Speaking Event: What Happens On the Other Side of Medicine

Day 1:  Prior to speaking to NHRMC staff

Day 1: Afterward, NATALIE talking to participants

Day 2 Speaking Event: Making Moments Matter

You can read more about this event here.

Day 2: NUNNALEE ON THE MOVE

https://www.nhrmc.org/nhrmc-foundation

 

The new pediatric center being built by NHRMC

 

A DMD Family:  Once Strangers, Now Friends

This is the DMD family we have grown to love and admire.

Christopher JonesMitchell's Journey In Action, Speaking, Enhanced EssayComment
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WHAT A DYING BOY TAUGHT HIS DAD *

We had just finished his early birthday. Mitch was grateful to have a few of his close friends over to celebrate his life. To my knowledge, none of the boys knew Mitch was dying, they just knew he was sick and we were celebrating his life a little early. If they did know, they kept it a secret so as not to frighten Mitch. Natalie and I carefully revealed his circumstance over time, but we wanted him to be a little boy just a while longer. That was our present to him.

“I will always be real and acknowledge the sad, then look beyond and find a reason to be glad. That is what a dying boy taught his dad.”
— Christopher M. Jones | Mitchell's Journey

At this moment, Mitch still had every reason to be discouraged. He knew his heart was failing and that no matter what, his life would change as he knew it. Despite his fears, he set his troubles aside and found joy in that moment. He knew he was in trouble, but he was just happy to be alive. There was so much joy in his heart that night. No longer tethered by a million beeping machines, Mitch was free … save the PICC line that entered his right arm and pumped medicine directly into his heart.

As I tucked him in that night, Mitch whispered, “Dad, I had the best day today.”   My heart nearly burst with a mixture of grief and gratitude.

Mitch taught me in this moment that there are still reasons to be glad, no matter what is before us. Though my family, darkness gathered around us, we had moments of sheer, almost heavenly joy. We were afraid but glad for the moments we had.

Mitch reminds me of a saying I stumbled into not long ago: “Don’t be so cool you can’t cry. Don’t be so smart you can’t wonder. Don’t’ be so set on your sunny days that you can’t roll with the thunder.” In so many ways, that saying described Mitch.

Now, there are times for joy – and this was one of them. My heart is glad every time I see this image. But sometimes the thunder rolls so hard it breaks us. There are sacred moments of immense suffering – the likes of which those who do not experience it themselves, can simply not imagine. It wouldn’t be long before the smiles and laughter that once graced the walls of our home turned to ash and a river of tears soaked the floor. There was real suffering in our home – and in truth, there remains a measure of suffering today. Grief is the work of a lifetime, and that’s okay.

Though I must continue this hard work of grieving and healing, I will always be real and acknowledge the sad, then look beyond and find a reason to be glad. That is what a dying boy taught his dad.

 

A few more thoughts:

One of the defining characteristics of Mitch was his ability to adapt.  Though Mitchell's muscles were weak at this time and he couldn't throw a regular ball for very long, he decided in this moment to play dodge ball with balloons.  Mitch laughed and laughed as he pounced each balloon toward his opponent.

This night, Mitch wasn't sad he wasn't strong like other kids, he was just glad he had any strength at all.

One more thing ... the shirt he was wearing bore the words, "Watch Me Win."  It was given to him as a gift when he returned home from the hospital.  Loving friends in our neighborhood wanted to give him a boost of confidence.  Mitch loved this shirt - both for the design and the message it conveyed.

Though Mitch lost his life, he won the more important fight.  By the very way he lived his life, he won the greater prize.

 
Christopher JonesOn Finding Joy, On Dying, Gratitude, Enhanced EssayComment
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