BARE FEET & BROKEN BONES

I think that nightmare scenario crosses every parent’s mind at one point or another and we ask ourselves: “What would I do if I lost my child?” In every way that matters, we are asking ourselves what would happen if we lost part of ourselves – for that is what our children are to us. That’s what our children will never understand until they have children of their own: they become more important to us than we are to ourselves.

Just after we were told Mitch had days to live, Natalie’s mother and father came rushing to the hospital to offer love and support. Over the next few weeks, my wife and I would keep the knowledge of our son’s impending death from Mitch. Peace of mind and childhood was our gift to our son – at least for a little while. You see, we didn’t know if he was going to die in an hour, or a day, or in a month and we wanted to help Mitch make the most of what time remained. 

I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.
— Christopher M. Jones | Mitchell's Journey

Palliative care workers circled our room and visited daily asking for permission to talk to Mitch about his death. Each time we told them no. Knowing our time with Mitch was short weighed heavy on our souls. We hid our broken hearts behind a soft smile and we put away our dashed hopes and shattered dreams under a blanket of hugs and loves. Though we didn’t know how to protect him from death, we could protect him from worry and fear. And that is what we tried to do. That was all we knew to do.

When these good parents arrived, Natalie and her father found an empty room in the cardiac intensive care unit. A curtain was drawn and a tender conversation between a daddy and his little girl ensued. Tears of deep grief and anguish fell to the earth. I wonder if the heavens wept just a little that day – not out of sorrow, but empathy. I don’t know what they talked about. I only know that empty room became hallowed ground between a good father and his little daughter. 

I stayed with Mitch and his grandmother in his CICU room. My mother-in-law is as good a woman as there ever was. Her heart was broken for Mitch and her daughter and our family. I’ll write of her another day.

After some time had passed Mitch asked me to get Natalie. When I went to get her I stumbled into a most tender and beautiful scene. I saw a good father embrace his daughter as she wept. In her trembling hand was a pamphlet about how to talk to your child about death and dying. That impossible scenario we couldn’t imagine living suddenly became a harsh reality.

When I saw my wife and her good father I sensed something similar between our Father. I thought of those times I knelt by my bed with bruised knees pleading for a way out for my son; the nights seemed to stretch out into infinity as I wet my pillow with tears. I felt the words in my heart, “I cannot take your troubles from you, but I will walk with you and lift you when you fall.”

Somewhere out there lives my son. And when I see him next I will drop everything and I will run … boy, will I ever run. The heavens will weep once more – but this time out of joy – for a family will be reunited with their young, fallen boy.

When I think of my own children, two of whom are teenagers and my youngest now ten, I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.

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SEEING TWO THINGS AT ONCE
Not many days from this photo Mitch would struggle in his bed and say, “Dad, I don’t think I can survive.” Words that are forever seared into my heart and soul. At that moment I thought to myself, but didn’t say the words aloud, “Son, I don’t know how to live without you.” Then death came gashing and crashing through our door.
— Christopher M. Jones | Mitchell's Journey

Mitch was wearing one of his favorite new t-shirts a loving neighbor gave him when they learned he was dying. The shirt bore the words, “Watch me win.” Brave words we often say when we shake our fists at an implacable disease – as if our will alone could stave off our frail mortality. Though human will is powerful, it is no match to God's will. Though he didn’t win the battle with DMD (not a soul does), he did win the bigger, more important fight. Mitch was a good human – and at the end of the day, that’s the only fight that matters. His philosophy was to be nice to others and have gratitude for life – for in the end nothing else mattered. 

I remember asking Mitch what he was thinking just after I took this photo. He said, “I’ll tell you later, Dad.” He would have this same look of knowing a few more times – and each time I asked he would respond, “Later.” Mitch never got around to telling me. Yet, I think I know.

As my son played with his toys, I couldn't help but notice the vein just above the bend of his elbow punctured by a tube that ran up his arm and pumped medicine directly into his heart. At first Mitch thought the medicine was making him better, but as death inched closer, he came to understand it was barely keeping him alive and that it wouldn’t last.

Slowly, almost invisibly, an old soul began to reveal itself. Not only was my son changing … my eyes were, too. I began to discern things that were kept from my mortal sight until then. There were times I thought to myself, “Mitch who are you, really? What is your real age and what are you sent here to do?” Though he was my child and I was asked by a loving Father to raise him, I felt like his soul was much older than mine and that, in a very real way, he was raising me. Heaven, it seems, is filled with curious mysteries.

Yet despite my growing sense he had an almost ancient soul … there he was, still very much a young child in need of love and comfort. I was beginning to see two things at once. I think Mitch was, too. I think he didn’t share with me what he was sensing because he didn’t want to frighten or disappoint me. I think he tried to protect Natalie and me in the same way we tried to protect him.

Not many days from this photo Mitch would struggle in his bed and say, “Dad, I don’t think I can survive.” Words that are forever seared into my heart and soul. At that moment I thought to myself, but didn’t say the words aloud, “Son, I don’t know how to live without you.” Then death came gashing and crashing through our door.

I would soon learn to look upon grief in the same way I saw my son; two things at once. Although the surface of grief is plain to see, seemingly clothed in pain and agony; there is so much more beneath – a certain beauty the human eye alone can’t see. It isn't easy or pain free - but somewhere in the midst of suffering there is purpose and a greater meaning. There are always two things at once: the thing that happens to us and then its purpose and meaning. We just need eyes to see.

 

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RIGHT BENEATH MY FEET

An impromptu family photo when our kids were little. It's an imperfect photo, which is a perfect representation of our family.

I thought to myself that day, "Were I to die this instant, my life would be complete." Those were the words of a young parent who simply didn't know ... for the longer I live, the more love grows. 

What would it take for my life to be complete? It's hard to know when there seems an infinite trail of love and beauty right before my feet. 

instagram.com/mitchells_journey

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PROFOUNDLY EMPTY, YET STRANGELY FULL

Our skin burned as if from a roaring campfire. The summer sun was about to fall behind the Oquirrh Mountains and offer some relief from the heat. Little Mitch scurried about on his plastic big wheel, wearing his favorite Hulk Smash t-shirt. I loved how he lifted his legs as he rolled down the modest incline of our driveway and giggled and giggled. I smiled then and I smile again today. A small Band-Aid on his foot offered evidence he was doing just what little children should do: explore. There was a thin storm cloud above us that created almost magical mist all around us; drops of water that looked like diamonds falling from the heavens. 

I look back on these nearly perfect moments in time with gratitude. Life wasn’t perfect back then. I worried a great deal about work, bills, and what I wanted to be when I grew up. I was a young father often humbled by the sacred responsibility of raising children. “Who am I to do such an important thing?” I would ask myself. I felt woefully inadequate as a father, but my love for my wife and children gave me the courage to carry on.

No matter where I am in life, it seems, I have to find the courage to carry on. 

I have been asked to speak at a funeral director conference in two weeks on the east coast. There I will share Mitchell’s Journey and a candid insight on our experience with a funeral home. 

Yesterday, as I began preparing my keynote for the conference, I began to reflect back on that time at the funeral home. I went through a corner of photos I hadn't ever really looked at. I took the photos, but I quickly put them away because my heart was much too tender. But now I had to look at them. I had to pull the relevant parts of the story so that I could share with these funeral directors our unfiltered experience. I thought I was ready. I wasn’t. I wept and wept. I wept so hard I almost threw up 3 times. 

Don’t worry, I’m okay. But I’m not okay. And that’s okay.

Some who lack empathy, or perhaps just lack insight, ask “Why do you do this to yourself?” To them I answer, “I am not doing this for me, I’m doing this for others, so they might understand and see.” Whether I’m speaking to the medical community, bereavement groups, businesses, religious institutions or youth groups … and now funeral homes … I share Mitchell’s Journey so others know what happens on the other side of medicine … what happens when we take our children home from the hospital to die, and how we die on the inside, yet must learn to live afterwards. I share this so others standing on the outside of grief might have a glimpse of what a sufferer might be feeling or thinking. I share so that others who are walking in darkness might find a measure of light, if only just to light the path just beneath their feet.

Even though I didn’t really want to go there yesterday, I had to, so that I might better serve that audience with information that will help them help others. At least for me, helping others makes the hurt worth it. I am going to hurt anyway, so I may as well use it to help. As I said in a recent keynote to a bereavement community, “Grief is like a flame that cannot be extinguished. As long as I love, there will be fire. What the flame means to me … what it does to me or for me is found in how I carry it. The flame of grief can either burn me or help me see.”

I don’t know that I will have anything special to say; I’m just an ordinary dad who lost his son and is learning to live with chronic grief. I just happened to capture every detail of our funeral experience. I hope whatever I share helps a little. I hope. 

Which brings me back to this picture: my son was a beautiful soul who left my world profoundly empty, yet strangely full.

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