A few weeks ago, I was asked to speak with Sarepta, a drug company whose doing some remarkable work with therapies related to DMD. Just prior to my speaking they were learning about pathology and the natural course of its biology. When I was introduced, they said I was going to talk to them about the human side of the disease. They wanted someone to lift the curtain so they could peer in and see the human impact of rare, catastrophic disease.

Because their leadership theme was on frontiers, they asked that I share the tiny frontier’s we faced as a family. From starting a family to diagnosis, progressive loss, death, grief and recovery, each of these presented themselves with new landscapes and challenges.

Using the metaphor of ascending a mountain, I shared an excerpt from an essay I wrote a few years ago entitled “My Everest” where I said I would rather look up on Mount Everest from the comfort of my rocking chair, by a gentle pond.

But life is neither fair nor is it always kind. Somehow, some way, we all must climb our personal Everest.

In this post, you’ll see a few excerpts from my presentation, including a conclusion video that combines two ideas: facing new outward frontiers and the deeper frontier that is found within.

Speaking of the internal frontiers, toward the end of my address, I talked about a certain type of bamboo seed that is known to take about four years to water and care for before it breaks soil. Then, it will grow over a hundred feet in a single month. My point with that example is we can often become impatient with grief, healing or otherwise growing. I shared a few ideas that I’ve discovered that help foster an emotional and spiritual environment for deeper growth.

The video at the end of this post summarizes some of the key ideas I was trying to convey - most notably the greatest frontiers we will ever face are the ones found within each of us. And, like a bamboo seed (see post, Bamboo & Better Days Ahead), it can take years before we see growth of any kind. Patience and persistence are key.

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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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I just visited little Mitchell’s place of rest tonight and discovered a carefully sealed Ziploc bag with a 2-page handwritten letter and this bottle of gold flakes. A sweet woman from Dupont Washington, someone whose name I immediately recognized because of her support of our charity run, shared her thoughts and feelings about little Mitch.

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She made reference to a story I had once written when I went to China and Mitch wanted me to bring him a gold dragon. I wasn’t able to find one and instead of being upset, he simply said that he was glad I was home. In honor of Mitch, she found this little bottle of gold flakes with an eagle on top… something reminiscent of things Mitchell loved. She left this as a token of love and respect for a little boy whose broken heart touched hers.

Sandra, if you read this, I want you to know how much your letter and this emblem touched my heart. Thank you for bringing me a measure of peace tonight.

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It was late spring, Mitchell’s headstone hadn’t yet arrived and each day was getting a little warmer than the day before. It had only been a few months since I lost my son and my soul was still dizzy with grief. Quietly, I was grateful for warmer days because the cold winter air carried with it vivid memories of the cold morning my dear son was rolled away from our home, never to return.

“At this moment I realized my responsibility as a father wasn’t to keep my son from hurting, for that is impossible. Instead, it was to teach my son how to mend broken things. I wanted Wyatt to understand real strength isn’t found in pretending to be unbreakable but in having the courage to admit our brokenness, then make broken things strong.”

— Christopher M. Jones | Mitchell's Journey

On this spring afternoon, Wyatt asked if I would drive him to the cemetery so he could visit Mitch. I told him I'd be glad to. “Okay, just a second,” Wyatt said as he dashed into Mitchell's room. A few second passed, and he returned with one of Mitchell’s favorite Halo characters and said, "Okay, let's go." As we arrived at the cemetery, I was curious what Wyatt had in mind, so I gave him some space and said, "Take your time son, I'll be nearby."

With that, he handed me Mitchell's Halo figure and gave me a soft grin, a confident nod, then sat on the grass and started talking to his older brother. I sat several yards from him but had one of my larger lenses so I could take photos without interrupting my son. I could faintly hear Wyatt’s young voice as he told his missing brother summer was around the corner, school was quickly coming to an end and a little about the movies he knew Mitch wanted to see. Wyatt told Mitch about some of the new friends he made throughout the year and how his teacher was so kind to him when he cried in class because he missed him. Wyatt continued to tell his brother about the tree Mitchell's school, and City Council planted in his honor.

It was a tender thing to see my youngest son struggling to sort things out. I sat in the distance and cried as I overheard Wyatt tell Mitch how much he loved and missed him.

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The protective father in me was tempted to sweep Wyatt away – to try and rescue or insulate him from hardship. Part of me wanted to distract Wyatt from the harsh realities of life or to soothe him with artificial comforts. But I knew better. I knew that in trying to insulate my son from pain, I would cause more harm than the original pain itself. Instead, I wanted to help Wyatt learn how to deal with hard things – for life is full of hard things. If I was to pass something on, I wanted it to be a knowledge of how to survive the storms of life. If there is one thing we can be sure of, it's we’ll all come to know hardship, and we’re all going to get broken in one way or another.

At this moment I realized my responsibility as a father wasn’t to keep my son from hurting, for that is impossible. Instead, it was to teach my son how to mend broken things. I wanted Wyatt to understand real strength isn’t found in pretending to be unbreakable but in having the courage to admit our brokenness, then make broken things strong.

If there’s one thing I pray most to teach my son – it is there's always broken things to mend, and if he’s wise, he’ll seek Heaven’s help and therein find the strength of a million men.

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