WHEN THINGS ARE RARE

I took Wyatt to sports clips today. When we were asked to check in at the kiosk, I saw Mitchell‘s name on the register.  This was the same place Mitch used to get his haircut on occasion.  He always loved to get the deluxe package where stylists washed his hair and massaged his scalp. 

... time is common to all of us –being in the moment is rare
— Christopher M. Jones | Mitchell's Journey

During one of our visits Mitch said softly, “Dad, I really like it when they run their fingernails through my hair. Sometimes I almost go to sleep.”  I chuckled and kissed him on the forehead and said, “Me too!  Wouldn’t it be nice if someone could do that to us every day?”  Mitchell nodded as his eyes turned down as if to think about what I said. After a few moments of thought, he responded, “Yeah, but then it wouldn’t feel so good anymore because I’d get used to it. I like it better when things are rare.”

That sweet exchange and many other memories I had filed in the back of my mind began to wash over me the moment I saw my son’s name on the kiosk.  It was an unexpected, painful reminder that my sweet son is no longer with us.

I’ve been happy lately – but I admit, my heart deflated at this moment.  And when Wyatt tugged my arm and said, pointing to the kiosk, “Hey dad, look, it’s Mitchell’s name.”  I felt a second wave of hollowness in my heart – an echo in the caverns of my soul.  Suddenly, I felt a deep longing to have that sweet little boy back in my life.

I can see how reading this blog can be misleading to some who might think I sulk about with my head hung low, constantly picking at my wounds.  What they don’t see is 90% of my life is occupied with my wife and children, work and other dreams I’m pursuing.  When I sit down to write stories of Mitch, I’m opening the door to the public to my personal therapy sessions – except I’m both the patient and the therapist.    Writing is how I grieve and how I heal.  It works for me.  When I write, I’m creating a grief moment – and those are healthy for those who will hurt for the rest of their lives.  What made this encounter with my son’s name so difficult today was its suddenness.  There as no warning … no way to prepare.  It was a trigger, and because of it, I wept.  They were refreshing tears.  Healing tears.

While this tender breadcrumb pointing to my son’s absence may have pained my heart, I was grateful for the reminder of my son’s philosophy on things that were rare.  Mitchell’s heart was a treasure chest in which he kept the sweetest things.  I suppose this journal is a record of the things he kept close to his heart and a missive on the things he’s teaching mine.

Mitch had a maturity of mind and soul that was itself rare.  He was careful never to let things he loved be over-used or taken for granted and he always delayed gratification so that the reward was both rare and deeply appreciated.  One year, Natalie challenged our children to not eat any candy for a year, and she’d pay them $100.  Mitch was the only one who met the challenge.  I even offered to make Halloween exempt from that challenge, but he chose to be true to his original promise.  On January 1st the following year, Mitch earned a crisp $100 bill.  To little Mitch, it wasn’t the money that mattered as much as the accomplishment.

Even more than material things, Mitch treasured moments like none I have known before.  I have yet so much to learn from my son.  Today I was reminded to treasure things are rare.  Specifically, while time is common to all of us –being in the moment is rare.   By looking backward and examining my life, I can’t help but appreciate the moments that are yet ahead of me.  Because of Mitch, I’m going to take extra care to treasure moments – for they are special.  They are rare.

SORROWS THAT THE EYE CAN’T SEE

This photo was taken April 3, 2013.  Exactly 1 month after Mitchell's passing, approximately 2.5 months from the time this sandwich was made.

About a month had passed, and I was treading the dark waters of grief. In a desperate search for peace and understanding, I was in Mitchell’s room meditating on the purpose of life and what I was to learn from the tremendous weight of sorrow. I sat on the floor by the edge of his bed, in the same spot I often prayed for him. The same place I tucked Mitch in for the last time. In every way that mattered, I was on hallowed ground, and my soul was searching for answers.

At one point, I noticed his school backpack hanging on the wall behind the door to his room.

Having walked the path of grief, I see things differently. Anymore, I ask those who walk in the shadows of sorrow, “Where does it hurt today?” Then, a tender exchange ensues, and a sorrow once invisible is made plain to see. Then pain is released inevitably.
— Christopher M. Jones | Mitchell's Journey

It hadn’t been touched since the day he went to the hospital for heart failure. With trembling hands, I opened his backpack expecting to discover special artifacts he left behind. I discovered in-progress homework, report cards, and other school things. I opened a spiral binder which had several creative stories he’d written. They were so cute and creative. My eyes welled with tears, and my already tender heart broke even more. I wished I had the presence of mind to discover those stories while he was living so I could tell him I was proud of him. I even found drawings Mitch made with the words: “To Dad.” I hadn’t seen them before. I wept like a child, for I wanted Mitch to know how much he mattered to me. I told him a thousand times, but I wanted one more.

As I explored the rest of Mitchell’s backpack, something seemed off. As I dug deeper, I found an uneaten sandwich covered in mold. I immediately burst into more tears. I wondered why Mitch didn’t eat his lunch that last day of school. Was he not hungry because his heart was already failing and we didn’t know? Or did a friend share his/her lunch with him? Was Mitch playing with his friends and simply forgot to eat? Or did he decide to eat cafeteria food that day? So many questions, absolutely no answers. All I saw was the tender evidence of a mother’s love in the form of a sandwich.

What I’ve discovered on this journey is, for those who grieve, there are sorrows that the eye can’t see. What’s more, the death of a child isn’t a singular event where the tragedy happens once, and that’s the end of it. The truth is, after the death of a child, the tragedy is just beginning. In fact, there are 10 million little tragedies between death and learning to live again.

The discovery of this sandwich is just one example; something invisible to others and known only by the person who grieves. But there are countless other discoveries the soul in sorrow must face.

Among the many difficulties of coping with grief is carrying sorrows the eye can’t see. Close family, friends, and others move on, and there is often an unspoken expectation that we move on with them. Yet, to tell someone who grieves it’s time to stop hurting is as audacious, even ludicrous, as telling a parent it’s time to stop loving their living children and become someone different. Love and grief are inextricably connected.

In earlier entries, I’ve described the loss of a child is something akin to becoming a spiritual amputee. We must learn to live without that part of ourselves; for years, we may struggle with balance, but if you’re patient, we’ll find our way through the hellish shadows of death to a new normal.

When tending to those who grieve, perhaps Susan Evans McCloud, an American novelist, author poet, and hymn writer put it best:

I would learn the healer’s art.
To the wounded and the weary
I would show a gentle heart.

Who am I to judge another
When I walk imperfectly?
In the quiet heart is hidden
Sorrow that the eye can’t see.

Having walked the path of grief, I see things differently. Anymore, I ask those who walk in the shadows of sorrow, “Where does it hurt today?” Then, a tender exchange ensues, and a sorrow once invisible is made plain to see. Then pain is released inevitably.

A PHOTO, A BREADCRUMB

We just found a digital camera that was abandoned a few weeks before the holocaust with Mitch. On that camera were a precious few photos that were taken just before he went into heart failure. This is one of those photos. I love this boy. So very much. I'm so grateful to have found this tender breadcrumb of my fallen son.

I'll post some of the other photos on Instagram
instagram.com/mitchells_journey/

THE EXAMINED LIFE

It was late afternoon and the air was almost uncomfortably humid and warm, even in the shadow of my home. It was Father’s Day 2012 – for those new to this blog, that was my last Father’s day with Mitch. My children each prepared a thoughtful gift and handed them to me. As I opened each gift carefully I looked my kids in the eyes thanked them for their love. Mitch sat next to me, like he always did at the dinner table. I miss that. Although I appreciated their thoughtful gifts – having them in my life was gift enough. A gift so grand I could scarcely contain myself. 

I was always confused as a young child when I asked my mother or father what kind of present they wanted for their birthday. They would respond softly in their own way, “Oh, just draw me a picture or write me a letter. That is what I really want.” My little mind pondered over their answers, confused why they didn’t want a toy or the next new thing. After becoming a parent, I began to understand their answer. I would trade every possession I have for another handwritten note from Mitch. They are treasures to me and always will be. 

When I first stumbled into this photo I wasn’t sure what to make of it. My heart first swelled to see a photo of Mitch and me together because they are relatively rare … at the same time it sank a little as I couldn’t help but wonder what was going on in the heart and mind of my son. Did he sense his life was coming to an end? Sometimes I think so. The more I reflect on my conversations with Mitch (many of which I have audio recorded and may share in future posts) I am beginning to sense something was brooding inside him. It was almost as if his soul knew something neither of us did – at least consciously. Mitch left little breadcrumbs that would suggest he sensed something big was going to happen. How big and terrible, we knew not.

Ironically, about 10 months before this photo was taken I told a business partner of mine, one with whom I share sacred conversations, that I sensed great unrest on the horizon. I told him I felt a significant change in my life was coming … so significant my soul nearly shivered. Yet, I wasn’t sure what it was. I even wrote about it in my journal. Sure enough, we would soon learn Mitchell’s heart was in serious trouble and that time was all we had left. 

That brooding sense something was on the horizon was one of many tender mercies from my Father. A warning of love and compassion … a warning to make moments matter before it was too late. That intuition … that whisper from a higher power was not an isolated event. My Father told me something was wrong with Mitch the moment I first laid eyes on him in the delivery room. I knew it … in every way a human and soul could know something … I knew it. In the coming months, as I held my young infant I would begin to sense that not only was something wrong, but that his life would be short. I tried to brush that feeling off as nonsense … but deep inside, I’ve come to learn that insight was heaven-sent. 

I am grateful for those [nearly] invisible warnings. They remind me so much more is happening than we have a mind to know. 

At least for me, the more I examine and understand the past, the more equipped I am to live in the present. I appreciate the value of a moment much more today than I did a few years ago. When I think of all the stupid things I did, the trivial pursuits, the wasted moments and opportunities lost … I wince a little on the inside. But, I don’t let my regrets break me, instead I use them to shape me. 

I suppose that’s the power of the examined life ... we stumble and fall, but we’re still alright.

THE SUN WILL RISE, BUT IT WILL ALSO SET

A few years ago we took our kids to feed some ducks at a local pond. At one point, as the sun was setting, Mitch pulled his iPod out of his little pocket and took this photo. Later that night, after he was tucked in bed, he sent it to me because Mitch wanted me to have a copy of the beautiful image he captured. The moment I received this photo I ran to his room to tell him I was so proud of him and that I loved his photo very much. Mitch smiled as if he were being tucked in a second time. I’ve learned from my children that tucking in has less to do with positioning blankets and more to do with letting them know they’re safe and loved. So, I kissed Mitch goodnight a second time and told him I loved him.

I treasured this photo then, but I treasure it even more today. I loved seeing the world through his eyes. What Mitch didn’t know was I took a photo of him taking this photo – which to me, is even more beautiful than any sunset. I don’t think he had any idea what a light to my heart and soul he was, and continues to be. 

I haven’t mustered the courage to go through Mitchell’s iPod yet. I know it will be a tender and emotional experience because locked within that little device are movies he made with his friends, photos he took, elaborate Minecraft creations, playlists, audio recordings and much more. One day I will. One day.

This image from my sweet boy reminds me that as grief subsides the sun will rise, but it will also set. As assuredly as the sun will rise tomorrow, I will experience peace and joy. But grief will return, too.

I just received a private message from someone who just discovered Mitchell’s Journey and began to describe her own grief journey. She lost her father to ALS (which, when it comes to symptoms and fatality, is fairly similar DMD) and shared how heartbroken she was to see him go. After his passing she was strong for her family but never had an opportunity to truly grieve. She said that when she read my essay, “OKAY, BUT NOT OKAY … AND THAT’S OKAY” the floodgates opened and said she “never cried so hard in [her] life” and that it felt good to release her sadness. I had tears of gratitude for her healing.

At least for me, I have discovered some of the purging and cleansing effects of deep grief. Any more, I’m beginning to see grief as a sweet release. Though it is painful and hard to bear, it is also necessary. The irony of grief is that when we allow ourselves to hurt we also allow ourselves to heal. I don’t know much … but one thing I do know is healing hurts and hurting heals. 

To lose a child is like being an emotional amputee. Yes, there can be healing around the site of the wound … but you will always want, reach and long for that which was lost. Like an amputee, you will never be the same … ever adapting to your new, compromised reality. 

I was reminded of my emotional amputation yesterday. I was in a public setting when I saw some sweet children about the age of Mitch when he passed away. Suddenly I felt the waves of grief overcome me. I kept my head down so as to not draw attention … but I let the tears flow. Like a summer storm, it was strong but it passed quickly and I was on my way. 

There isn’t a day that goes by that I don’t think of my son a thousand times. I’m grateful that my heart only breaks 500 times … the other 500 times are warm and peaceful. That’s progress and I can live with that. 

As assuredly as the sun will rise ... with feelings of hope and peace, it will also set ... where grief will visit and my heart reset. 

TO FORGIVE IS TO LIVE

It wasn't long ago my dear wife came into my basement office and handed me a sealed envelope. It was another breadcrumb left behind by our tender son that had been sitting in a small stack of papers waiting to be organized. On the front of the envelope was Mitchell’s handwriting in purple crayon addressed to his best friend Luke. As my wife gestured me to open it, my hands trembled a little. Actually, they trembled a lot. This undelivered letter was from Mitchie’s last real birthday (April 29th 2012).

As I opened the envelope and then the carefully folded paper, I felt that all-too-familiar lump in my throat begin to grow. Swallowing suddenly became difficult and the air became as thin as Jupiter's. The last person to touch that paper was my dear son – and my fingers trembled with grief. Mitchell’s sweet letter read, “Dear Luke, I am so sorry. Will you still be my friend? I really want to play with you. :-) I really want you to come to my birthday party this Friday.”

Beneath the hand written letter were balloons for those he invited or near to his mind. Included were his brothers and sister, and Derik and David (two young boys who live just down the street). Floating above the other balloons were two; one for Mitch and another for Luke – as if to symbolize their special friendship and olive branch. As if his carefully drawn artwork weren't enough, Mitch re-traced his letters with different colors to show that he really cared. I love children. 

Mitch and Luke almost always got along, but because they were human they also had disagreements from time-to-time. Clearly, this was one of those moments. A childhood indiscretion was noted, a soft petition for forgiveness was made … and my heart swelled to see the innocence of children on display. 

In the grand scheme of things their disagreement was hardly a speed bump … but to Mitch, a young boy who treasured his relationships, it was a mogul turned mountain and he wanted to make it right. Luke, was ever the faithful, forgiving friend to Mitch and they always seemed to bounce back quickly if there was ever a disagreement on either side. 

I’ll never forget when Luke stood at the foot of Mitchell’s bed the evening before he passed away to say goodbye and share how much he loved him. That was a moment that brought me to my knees and broke my soul into smithereens. Never had I seen a more powerful gesture of brotherly love among humans. I pray that I never have to see such a sight again.

I admire the absolute goodness of children. If only adults could be as grown up as our little ones are at times. Emma Goldman wrote, "No one has yet fully realized the wealth of sympathy, kindness and generosity hidden in the soul of a child. The effort of every true education should be to unlock that treasure." At least to me, this handwritten note from my son (a letter that could have been written by any one of your children), is a master class in what it means to be human. Mitch and Luke taught me through crayon and pencil that to forgive is to truly live.

Any more, it seems the older I get the more I find myself trying to unlearn what the world has taught me and re-learn what children demonstrate so naturally.

BREADCRUMBS & OTHER THINGS

Earlier this spring my wife grabbed my arm and escorted me to a corner of our home quietly pointing to a small gap in some rocks and said, “Look.” Because we live on the very edge of our valley, at the foot of the desert mountains, I thought there might be a tarantula or snake den or something strange I was being asked to catch … so I carefully peered into the shadows of the rocks – unsure what mystery lurked below. To my surprise I saw something tender and it grabbed my heart. 

Tucked carefully in a tiny cavern within a rock window well was a stash of Mitchell’s favorite water balloon grenades. He placed them there the summer of 2012 to keep others from wasting his prized ammo. I still remember the epic water battle our kids had that summer – Mitch giggled a lot but he was also a fierce competitor. When I saw this weathered plastic bag I could almost hear, like a faint whisper, all of the neighbor kids and Mitch laughing and playing in the background. This was a relic from the last of the water wars that year. I thought little Mitch had used all of his balloons and was surprised to see this little treasure of water weapons hidden in the rocks by his little hands.

Natalie and I stood in reverence at this unexpected discovery and our eyes welled with tears. We felt a strange blend of grief and love at the sight of this little breadcrumb our son left behind. This time there was more feelings of love than grief. But there was still grief … there will always be grief. Like an archaeologist yearning to know the story behind a long-lost artifact, I wondered what my little boy was thinking when he hid away his balloons. Was it a fallback stash if he lost ground in one of his battles or was it his primary weapons depot? All I know is he loved those water balloons – and because he loved them, I loved them, too.

Having lost my little boy I have become sensitive to the breadcrumbs he left behind, for each of them tell a story – and those that don’t will leave me forever wondering. 

I know this isn't the last of the breadcrumbs, either. There will be more unexpected discoveries in the months and years ahead and I don’t believe all of them will be painful. Like this little discovery I believe they will be more lovely than languished. 

Though I always tried to be an attentive husband and father I know I have missed out on breadcrumbs of days past. I know this because whenever I found myself in trouble … whether from a strained relationship or almost any difficulty, it was because I didn't notice the breadcrumbs others left behind. There is an old Chinese Proverb that says, “There are no secrets of the soul conduct does not reveal.” Little Mitch taught me to look and listen and notice the breadcrumbs. I have a long way to go – but at least I know what I need to work on. I hope to always be alert to breadcrumbs and other things, the kinds of breadcrumbs you can hold in your hands or see with your eyes and the other kind you can only feel with your heart. 

Everything is in the breadcrumbs.