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Overcome by a high fever, Mitch lay motionless in his bed.  Our hospice nurse informed us his body was making one last attempt to survive and that his time was very, very near.  Natalie sat by the side of his bed and began reading a children’s book that Mitch purchased and been wanting to read a few months prior.  With a soft voice, even that of an angel, Natalie began to whisper that sweet story to her son.

Little Mitch was awake, but he could not open his eyes.  His only means of communication was squeezing our fingers when asked a question.  He signaled to Natalie he wanted her to read it to him.

“You know what I think?  If you’re going to build muscle, you must lift heavy things.  It takes work, sweat and a lot of effort.  Why should my soul be any different?  I guess that’s why we have to carry this.”

— Natalie Jones | Mitchell's Journey

Ever since Natalie was a little girl, she dreamt of being a mother.  Having and raising children of her own was the greatest desire of her heart.  So in this tender moment, my heart sank to the floor as I saw a noble mother … a woman who would have laid down her own life if it would have spared her child harm, forced to say a slow and painful goodbye.

There was no malice in her.  She was a kind-hearted soul who always found ways to serve those around her.  As for Mitch … he was innocent and good.  He had done the world no harm – in fact, he brought the world a measure of peace and comfort by his gentle nature.  Yet here they were; seemingly undeserving of such sorrow.

There was a time that it almost felt as if Mitchell’s room was transforming into a kind of spiritual train station … that we were waiting until such time our son would be swept away to some far-off place, never to return.  Knowing that time was near, my heart swelled with love and gratitude when I saw Natalie do what noble mothers do … love and serve.

The next day Natalie and I would find ourselves kneeling, not at the side of Mitchell’s then empty bed, but our own, pleading for comfort.  For months, we would wet our pillows with tears of deep grief and a most tender sorrow.

How is it that two noble souls were caused to suffer in such a way as this?  A mother’s lifelong dream dashed and a faithful child’s life cut short.  Surely there are others in this world who would cause harm to others – why not them?  Why must the innocent and pure suffer?

I do not know the purpose of all things – but I have discovered a little about the meaning of human suffering.  I’ve been taught that even if we do well, and we suffer for it, that we’re to take it patiently.  I have learned that it rains on the just and unjust and that nobody is spared sorrow.  I don’t ask “Why me?” … I ask “What am I to learn from this?”

Just today, Natalie and I went to the cemetery to visit little Mitch and reflect on our last 4 years without him.  Natalie said, “You know what I think?  If you’re going to build muscle, you must lift heavy things.  It takes work, sweat and a lot of effort.  Why should my soul be any different?  I guess that’s why we have to carry this.”

There have been times in my life when I fell deeper in love with my wife.  At this moment, when Natalie read to Mitch on his dying day … when she served him with tenderness and love – I fell deeper in love with this noble mother.  And I fell deeper in love with her again today, as she shared a spiritual insight that strengthened me and gave me fresh courage.  I am grateful for this noble mother who loves and serves, despite the heavy things she must carry.

I am a lowly husband and father who stands deep in the shadow of his wife and fallen son.  I hope to always honor Mitch by serving, protecting, and loving his mother.  While the world, delirious and confused, pointing one way and another … I will follow the example of Natalie, my teacher … a noble mother.

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I remember this cold winter night when Natalie tucked our sweet boy in.  Mitch loved to be tucked away before he slept and the closer his tender little life came to the edge of the abyss, he seemed to want that comfort more and more.  I believe part of him, sensing time was short, was afraid of the night – for what if he didn’t wake?  Mitch didn’t want to die; in fact, he very much wanted to live.  Though his muscles were getting weaker and he was able to do less and less, he wanted to hang on to whatever life he could.  As I mentioned in an earlier post, he wasn’t a glass half empty/full person … he was just glad there was something in it.  For Mitch, even the smallest drop in his cup was cause for gratitude.  Oh that I could be a shadow of him.

“The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped. That is how we hold our broken pieces together. ”

— Christopher M. Jones | Mitchell's Journey

After talking for a while, Natalie reached over to Mitch and they gave each other a warm embrace.  My heart swelled as I saw these two remarkable souls hold each other as if to say to each other, “I’ll hold your broken pieces.”  Natalie fought valiantly to keep Mitchell’s broken body together while his sweet soul seemed to hold her broken heart and keep it as one. 

There was never a night that little Mitch didn’t get this same hug from his mother.  She was his greatest comfort in life and he loved her so.  Though I tried to be there for my son in every way I knew how, there is simply no equal for a mother’s love.

This photo was taken January 12th, just a few days after we learned his heart was collapsing and that therapies were not working.  He was denied a heart transplant because he had a fatal disease and all we had left was precious time.  We didn’t know how much time – we just knew the end was coming.  Natalie and I cried every night under what felt like an ever blackening sky – for hope had faded like the evening sun.  In the darkness, fear of losing him loomed heavy like a thick fog and we didn’t know where to go or what to do.  We just knelt and prayed for help.

Two weeks later Mitch would be admitted to the ER for end-stage heart failure … and though we already felt broken, we were about to be broken further than we could imagine as we watched our boy slowly die.  Then came grief, which broke our brokenness even more.

My greatest heartache in life was then, and remains today, knowing that we couldn’t save him.  That is a grief of another sort … a grief added to his death.  A grief twice.

Since Mitchell’s passing, Natalie and I have learned how to hold each other’s broken pieces together.  It isn’t always easy, especially when we feel like we’re falling apart ourselves – but we find a way to set aside our sorrows and be there for each other … and that is what makes the difference.  The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped.  That is how we hold our broken pieces together.  Mitch was scared, yet he tried to comfort his mom anyway.  In return, he received great spiritual comfort.

I know that Mitch and my Father are holding some of my broken pieces together, pieces unknown to me.  I can sense heaven’s hand in my life – and for that I am grateful.  Though I carry great grief, I also carry gratitude for feelings of peace. 

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Everything was falling apart. Mitchell’s vitals were on a steady and quick decline and all he wanted to be was a kid.

Death was clawing at our door and would soon find its way in. We had reached a point where we began to administer powerful drugs to mask the pain of organ failure. He was already on medication that erased from the mind oxygen hunger; else he would have felt out of breath, as though he were vaguely suffocating. With each dose of these new drugs, Mitch became more and more sleepy.

“I marveled at how she became a pillar of strength for my son and family. When I was a jellyfish, she was made of carbyne.”

— Christopher M. Jones | Mitchell's Journey

We were in the middle of a dilemma: we wanted every minute we could have with Mitch, but we didn’t want him to suffer. To withhold medication so he would remain awake would have been selfish on our part, and would have caused our little boy pain. In order to spare Mitch unimaginable agony, we had to let go of what we wanted so that he wouldn’t suffer.

Mitch began to realize his medicine was making him sleepy, so he started to resist each dose because he wanted to be awake. He wanted to live his life – for he was glad to be alive. With tears running down our faces, we would explain to Mitch that the medicine would keep him from hurting. “But I just want to be awake. I just want to live,” Mitch would say in a soft, breathless tone. Then, not wanting to suffer, he would then take his next dose of pain medication and fall into a deeper sleep than the time before.

I can’t count the number of times I knelt, with bruised knees, at the side of Mitchell’s bed pleading with our Father to spare my son. And if he would not be spared, I begged that He would help my little boy to not feel scared or alone … that he would be given a measure of peace and understanding beyond his young years.

I also prayed that my Father would strengthen my feeble back so that I might learn to carry what I must. A weaker man he could not have chosen to bear this burden … for I was then, and remain today, imperfect and flawed. I didn’t feel capable of carrying such things.

So as I sat across Mitchell’s room, I witnessed two tender mercies that served as an answer to my prayers. Just after his dose of medicine, baby Marlie placed her head on Mitchell’s lap, ever offering tender affections. Natalie, my dear wife, sat softly next to Mitch and comforted him with a love only a mother can give. With her every gesture, it was as if she said, “Sweet boy, don’t be afraid, I will walk beside you.” I marveled at how she became a pillar of strength for my son and family. When I was a jellyfish, she was made of carbyne.

In this very moment, I suddenly saw life through heaven’s eyes. Though I witnessed my little boy suffering the effects of being mortal, I also saw two angels who walked beside my son … tender mercies from a Heavenly Father who loved and cared about Mitch. In that moment, I was overwhelmed with gratitude and understanding.

Losing my son has forced me to dig deep. Yet, this hardship didn’t weaken my faith, it strengthened it and rooted out the stuff that got in the way. Despite the darkness of death and the weight of grief … which has been soul-crushing … I am a personal witness to tender mercies. They exist. They are as real as anything I know.

Though I am still blind and weak, I have a Father who patiently walks beside me … ever generous with tender mercies. I pray every day that I will have eyes to see. For if He was there for Mitch, it might very well be that He is doing the same for you and for me.

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Natalie helped tiny Mitch waddle to the edge of a puddle that hugged a gravel road. Mitch, like all young children, was entranced by water and wanted to splash in it, maybe throw a pebble or two and watch the ripples dance across the surface. Though he looked healthy, his legs and body were already weakened by the relentless muscle wasting of DMD and this sweet boy needed his mommy to keep him from falling over. With a tender love and patience, only a mother can know, Natalie held his tiny hand as he reached down to feel the cold water on his fingertips.

As I watched my sweet wife and tiny son, I remembered something Euripides once observed, “Oh, what a power is motherhood, possessing a potent spell. All women alike fight fiercely for a child.” Oh, how my dear wife fought fiercely for our child. She rose like a lion with wings of fire, her eyes broken, yet determined. So many times I felt dwarfed by two giants: Mitch and Natalie. I still stand deep in their shadow and will honor them all the days of my life.

It is something of a terrible irony that the very things we are tempted to dismiss in ordinary life and take for granted are the very things we are desperate to hold on to once our loved ones are gone. 

I don’t speak only of the stark contrast between life and death; I speak of life and the passage of time. For, I have been startled how the phases of life can slip through our fingers unaware. I think back when Wyatt was a very young boy and how sophisticated he was in word and thought. I recorded a few of our late night conversations, which are priceless and comical – but I wish I would have recorded more. At the time, his cute voice and tender thoughts were familiar to me, even ordinary. It is so easy to think things will always be the way they are, but everything changes. Everything. Even now, my dear daughter, Laura-Ashley is going to graduate from high school a year early and go to college later this fall. It seems like yesterday she was my little girl with a plastic clip in her hair and a sippy cup under her arm, who wove fantastical stories with me in the vast expanse of our imagination. It feels like just yesterday. Time waits for no one.

So when I think back on this cool summer afternoon in the heart of Wyoming, my heart swells with gratitude because tiny Mitch was blessed with a mother who knew the value of a moment and never let a chance to experience life slip by. Natalie taught me to cling to moments, not digital distractions or things, so I look back on my life my heart will always sing. 

I recognize that much of this blog is focused on Mitch and my reflections on life because him. I think clinging to memories is what so many on the other side of grief don’t understand; some wonder why we want to talk about our lost ones, not realizing what we had is all we have left. We don’t get to make new memories … all we have is what we’ve done. Sometimes we talk because we’re afraid of forgetting. Other times we just need to cry. Still, other times we’re trying to make sense of a nightmare known only to those who walk in such darkness. We cling to our memories, both good and bad, because in the end, that’s all we have. 

When I cling to this gentle memory of Natalie and my tiny son, it reminds me to put my phone down and splash while I can – because everything changes. Everything goes away, eventually.