Posts tagged Heart Failure

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.


Last week, while attending a #ppmd conference, Natalie and I met several families with whom we discovered an instant bond. I gave this young boy, Logan, one of Mitchell's medals from our annual#milesformitchell run. I wanted him to know that he was remarkable and that I admired him. He was such a sweet child and reminded me of my son. I was also grateful to have met his parents, who were as strong as anyone I've ever known. I only wished there was enough time to sit down with every family and learn their story.

Losing our son didn't just break our heart; strangely, it enlarged it. Since then, we have learned to love others and empathize in ways we never imagined. The further I head down#mitchellsjourney the more I'm beginning to realize that we may not be able to save lives, at least tomorrow, but perhaps we can help save families. For if we save a life, yet lose our families, we may have won a battle but will have certainly lost the war.

... there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other.
— Christopher M. Jones Mitchell's Journey

Mitchell’s neurologist, the same doctor who diagnosed him at the age of 3, came to the Cardiac Intensive Care Unit to say hello to our son. Except, she wasn’t really coming to say hello; she came to say goodbye – for she learned Mitch had end-stage heart failure and cardiologists thought he had days to live. 

This good doctor had a reverence about her as she set aside her degrees in medicine and practiced humanity. My heart swelled as I heard her speak softly to our little boy. She was kind and compassionate, even when she didn’t need to be. We were not even at her hospital, yet she went out of her way to be human. By stark contrast, a different doctor who denied our son a heart transplant was visiting other patients right next to us. Our son was dying and she never said a word to us; she walked by us as though we were ghosts. Imagine the deep psychological panic we felt when we saw other patients receiving life-saving treatments right next to us, while our child was denied help and hope. I wept so hard that night I nearly passed out from exhaustion. 

I’m not angry at that doctor for being so impersonal, nor am I angry with God that my son was called home. I am sad. Sad beyond all description. But I am not angry, for anger is a toxin that destroys us from within. 

Little Mitch looked softly into his doctor's eyes as she leaned in and said tender things to him. Dr. Kerr didn’t know, at the time, what her visit meant to my son. This was not a billable visit. Insurance wasn’t going to reimburse her travel. Instead, she came on her own accord because she remembered why she practiced medicine in the first place. She was then, and remains today, the personification of The Child First and Always.

Later that night, Mitch told me how much he loved his doctor and how special her visit made him feel. I can only hope that during those moments when my son was slipping away, he remembered the good people in his life and the love he received. I hope that brought him comfort. I hope it brought him peace.

It occurred to me during this tender exchange between Mitch and his doctor that there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other. We are all mortal and death is our inheritance. 

Though we cannot stop death, we can help each other along the way. When someone’s time has come, we can, like this good doctor, love them and offer comfort. When medicine can’t save us, we can offer love and compassion, and that is medicine for the soul. 

It’s okay, Mommy.” He said those same words just a few days prior when he told my wife and me that he didn’t think he could survive. In his moment of realization … when he knew he wouldn’t survive, he didn’t seek comfort from his mother … instead, he handed it to her selflessly. ‘I’ll be okay, Mommy.’
— Christopher M. Jones | Mitchell's Journey

Natalie had wept for a few hours. Exhausted from grief, she curled around her young boy’s head as if to comfort him – even though she was in the depths of hell and very much in need of comfort herself. 

There, in the quiet of a winter night, the world had fallen away into oblivion … and all that remained was our son whom we fought valiantly to save, but could not. As the warmth of his body drew cold, darkness gathered round us. How pitch black that darkness felt, I have not words to describe.

Just then, in that moment of profound agony, when hell seemed to open its mouth wide open … as if to swallow us whole, something sacred happened. Natalie felt a distinct impression that Mitch lingered … that he was with her in Spirit and she felt as if he whispered, “It’s okay, Mommy.” 

Comfort was his parting gift to his mother’s weary and broken soul. Comfort, and a knowledge that he still lives and loves her and that, at times in her life, he will be near to help. 

“It’s okay, Mommy.” He said those same words just a few days prior when he told my wife and me that he didn’t think he could survive. In his moment of realization … when he knew he wouldn’t survive, he didn’t seek comfort from his mother … instead, he handed it to her selflessly. “I’ll be okay, Mommy.” 

I don’t know why such heavy things were placed on his tender shoulders, for he was an innocent boy of deep faith and enduring goodness. He was honest, faithful and true. At 10 years old, he was everything I have ever hoped to be. Yet, he died. 

Some might say God is cruel or indifferent by letting such hardships happen to children. What they forget is that nobody makes it out of here alive. What’s more, the purpose of life is not to build homes and garnish them with material things. We are here to struggle and walk by the dim light of faith … and in our struggle, we will be made strong. That is an immutable law of nature that not only applies to our bodies and minds, but our souls. Struggle makes us stronger.

I have always appreciated the words of the French philosopher Pierre Teilhard de Chardin, who once observed, “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” Those are words to remember, especially when our bodies fail us and those we love.

I don’t know the meaning of all things, for I am yet a child who is learning to hear the voice of his Father. While I have much to learn, I have discovered a few things as I have stumbled in the valley of the shadow of death. I have come to know things I cannot deny: I know we are loved by a Father in ways we cannot yet comprehend, but I have felt a portion of that love and it has changed me from the inside out. I know that our spirits live on, for my dear wife and I have felt the presence of our son. I know that those who go before us can visit and offer us comfort in times of trouble.

As ancient Elisha once observed, “Fear not: for they that be with us are more than they that be with them.” I hope that my spiritual eyes will be opened so that I may see what is often hid from sight while living in mortality. I will always remember this dark winter night when my wife sensed our son’s presence, just beyond mortal sight. “It’s okay, Mommy” … a comfort and plea … whispered from a sweet little boy who wanted his mommy to see. 

NOTE: I gave this to Natalie on Mother’s Day. We both wept as we reflected on this sacred evening where there was both the darkness of grief and the light of God. This art will be part of a book I plan to release later this fall.