Posts tagged Babies Made of Sand
BRUISED KNEES & BROKEN HEARTS

As the winter sky drew dark Mitch began to fade. He didn’t need to say anything, his tired eyes said a million things at once. Natalie tenderly scooped him up in her arms and carried little Mitch to his room. My heart sank as I saw my little boy listless and drifting away. I could almost hear death violently gashing at our door … about to barge in like a terrifying home invasion to steal my son away. 

Later that night I prayed to my Father, knees bruised from prayer. I prayed the words of a broken son and terrified dad in need of comfort and council, “Oh Father, how am I to do this difficult thing? I’m so afraid. My hands and soul tremble. I love my son and don’t want to see him suffer. I will take his place, if you will allow me. Please … not my son. If there is any other way … please …”

I often hear people speak of God’s grace when their children are spared suffering or sorrow. Some will say, almost in a tone of victory, “God is good. All the time.” But what happens when our children are not spared? What then? What happens when things go from bad to terribly, horribly, unimaginably wrong? Has God forsaken us? Has he left us abandoned in a wasteland of grief and sorrow? My experience tells me no. In fact, I have come to see there is a purpose to all things … and when I quiet my mind and focus my spiritual eyes, however blinded by tears, I begin to see things as they really are. That gives me hope.

The death of a child is uniquely and exquisitely painful, whatever the age. At least for me, my son’s passing at the age of 10 was a scene from my worst nightmare. As his father, Mitch saw me as the ultimate problem solver, his protector and soul mate. He was so innocent and believing and good. Yet, despite all that we tried to do, I was unable to save my son. With that harsh reality comes unavoidable feelings of failure and regret, despite what I already know. Such is the burden of grief. And a terrible burden it is.

Though the path that lay before us was dark and frightening, I also know my Father put a dim lamp before our feet so we could find our way. We knew we were not alone. Despite our journey through the dark wilderness of grief, we have come to realize were not abandoned. Not once. To the contrary, in our moments of greatest darkness we were carried, sight unseen. I can see that now. I can see it plain as noon day.

I don’t know the secrets of heaven, however much I wish to see and understand them. I don’t know why innocent children are made to suffer. But they are … and they do. God could stop it, but He doesn’t. Clearly suffering is allowed to happen. So, rather than shake my fists at the heavens – as though my puny protests could change the grand design … I have learned to listen with my soul and see where I was once blind. 

I have learned that bruised knees and broken hearts are important keys to building our spiritual parts. Being human we would avoid pain and sorrow … but that is where growth starts: bruised knees and broken hearts.

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FILLED TO INFINITY

Winter was pressing gently on us and the skiffs of snow and crisp air seemed to promise colder, snowier days ahead. With the holidays approaching, Mitch was excited about the season of dad’s famous hot chocolate, sleigh riding, popcorn and movies by the fireplace, Christmas presents and lots of cuddles. The little boy in me was excited, too.

When I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.
— Christopher M. Jones | Mitchell's Journey


I left a busy day of work so I could meet little Mitch at the University of Utah Hospital where he was to meet with Dr. Flanigan, a specialist who is leading some research with neuromuscular disease and DMD. 

Just 20 minutes prior to taking this photo I was in the hall of the hospital peeking at Mitch through the door of an examination room that was open a crack. I was pretending to sneak around while a nurse was doing some benchmark tests. Mitch kept trying to hold in his giggles as if we were both going to get busted. I remember when I was a young child trying to prevent a giggle at church or in school … it was always the moments you weren’t supposed to laugh that seemed to make giggling the most intense. Mitch was having one of those moments where he was about to lose himself in laughter. The nurse played along and pretended to be stiff and orderly – but in her heart, she was giggling with us. I was so grateful for medical staff who care for the heart and soul as much as they do the body.

At the end of the doctor’s visit, I kissed my wife and kids and said goodbye. As I started to walk to my own car, Mitch turned around and smiled as I said “I wuv you Mitchie!” My heart was overflowing then and it overflows today when I look at this photo and see his smiling face. 

I don’t remember the substance of the business meetings I had that day, but I can tell you the meaning of these moments and what happened with my son. I remember what happened because that’s what matters most to me and I chose to be in the moment. If I wasn’t careful, I could have shown up at the hospital but never really arrived. I know how easy it is to be distracted and disconnected from what is in front of us. From the digital devices that entice us away to preoccupations of work or hobby … or perhaps simply stress; it is easy to be somewhere but nowhere. 

I have discovered the true present of being present. Not only did being fully engaged with my son mean a lot to him then, reflecting back on this moment now is a gift of comfort to my weary heart. It is a reminder to me, when I’m tempted to doubt myself, that perhaps once in a while I got something right. It motivates me to keep getting things right. I miss the mark more often than I want to … but I keep trying.

Just the other day I was visiting with my mother about life. I asked her, “What is the one thing in life that has most surprised you?” She said, “The brevity of it.” I immediately felt the truth of her words. Life is brief … and moments are briefer, still. How easy it is to be swept away in the thick of thin things and be robbed of life’s greatest gifts. This photo is a symbol of the present of being present. 

So, when I think back on this cold winter day, while we were carefully wrapping presents we'd soon give away … I realized that very moment the greatest gift we can give one another is time and attention: love from mom and dad, sister and brother. It’s never toys and things our kids are really after … but love, acceptance, guidance and laughter. Those are gifts of greatest import … for life, after all, is exceedingly short. And when I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.

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I’LL LIFT YOU WHEN YOU FALL

Mitch was always concerned about falling. Unlike “regular kids” [as he called them] he lacked the strength to break his fall and lessen the impact of hitting the ground. Gravity was no friend to him and when he fell, he fell hard. Toward the end of his life Mitch found it increasingly difficult to get up from the ground by himself. Sometimes it was impossible. 

Sweet Mitch wanted so much to run and play like other children. And when he did, he got himself in trouble. Every time he tried, he fell. Unlike a benevolent tutor, nature never rewarded his effort. In fact, the harder he tried the weaker he became. 

Last summer we took our kids to a park just down the road from our home. I loved the summer clouds towering like mountains in the sky. Mitch and I used to lay on the grass and look in to the vast blue and imagine what it would be like if we could bounce from cloud to cloud like trampolines. This was one of those days.

Mitch was doing his best to run around and be like the others but he couldn't keep up. At one point he fell down pretty hard and Natalie raced to lift him. She said to him, “It’s okay honey, I’ll lift you when you fall.” I loved hearing that. I wrote about it in my journal that night and I cried. Her words kept playing back in my mind like a beautiful sonnet with a heavenly promise … “I’ll lift you when you fall.”

And that’s how it was with my wife … ever there to lift our children when they fell. If there was one thing Mitch could count on, it was his mom. She was there for him, always. 

Mitch fell a lot this day … and he fell a thousand times since. Many times it was painful. But he always tried. And his mom, an angel made mortal … brokenhearted … was always there to lift him. 

I miss my son. Oh, how I miss him. I would do anything to be tired again … to be worn out in his service. What I wouldn't do to be inconvenienced by his care if that meant I could hold his hand once more and look into his eyes and tell him how much I love him.

In this photo are two broken giants that I admire greatly. I stand deep in their shadow. I pray that I have the courage to try like my son tried. And I pray that I have the selflessness to set aside my own comforts and lift others like my sweet wife lifted my son. These two are my heroes. And I love them.

I cannot help but think that somehow, when all of this is over, we will find in our brokenness was the secret to being made whole. That our weakness, if we seek divine help, can be made strengths.

There is a reason we fall. And a reason we were meant to lift. 

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BUT IF NOT

Mitch lowered his head into his lap, tired of hospital visits and anxious to go home to his friends and family. My son looked to his future with youthful enthusiasm; yet, what he thought was a beautiful sunrise on the horizon of his life was in reality, a darkening sunset. As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could. Medicine was failing us. Medical bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last minute interventions were too little, too late.

I suppose there are a million and one reasons I could be angry with people, medical systems and God for all that has happened. But I am not. I am only grateful. I am grateful for what I did have; for I had a chance to love my little child for 10 amazing years. He became my friend and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.

On my son’s journey through life and death there were many times I cried out in my mind and heart, “Oh, Father, this hurts. Where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered when the night might end. I wondered if it would ever end … for I had never known a darkness so pitch. A grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles.

Two years later I can say with confidence the darkness fades and strength returns. In fact, light and life return. That is not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me. For that I’m grateful.

The question I hear over and over from others on Mitchell’s Journey is “Why?” I’m not sure it’s entirely possible to know why we experience what we do. When hardships come some people get swallowed up in rage and self-destruct. Others blame God for their suffering – as though they should be the only human exception from pain and sorrow. And there are others who insist a loving God wouldn’t let us hurt – therefore He must not exist, or that He is cruel and unkind. There are so many ways to look at pain and suffering. So many ways to learn from it, or run from it.

I shared this in an earlier post: “Whether we settle the question ‘Is God the author of our suffering?’ or not, is immaterial. If our suffering is caused by other means … be it our own poor judgement or the bad choices of others, or perhaps our suffering is just a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.” 

There is an ancient account of three God-fearing men who were to be thrown into a fiery furnace if they didn’t denounce their faith before an unscrupulous king. They boldly replied they would not. They also told the king (Nebuchadnezzar) that they believed God would protect them, but if not, they would remain true. 

But if not … those are easy words to say in Sunday School, Shabbat, or from a pulpit or stage. It is only when we utter those words in our own wilderness of afflictions that the true lesson and test begins. What I’ve learned is we cannot escape hardship: but we can learn and grow from it or we can revile and shrink because of it. I will not shrink.

I believe life is hard because we are meant to become strong as well as good. Despite my heavenward pleas to spare my son, a little boy I loved with all of my heart, I now find myself on the other side of that phrase “but if not.” What I do next with my reality matters. I can shake my fist at the heavens in anger – but that won’t change heaven, it will only change me … for the worse. Or, I can take a knee and plead for understanding and wisdom. I can pray for a soft heart and discerning eyes … to see past mortality’s deceiving guise. For when I hear the terrible ring of death’s loud toll, I am reminded to worry less about the body and more about the soul.

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