View fullsize

Every time I saw Natalie comfort Mitch, I thought I witnessed the most beautiful scene in all the universe. It was the day before Halloween, and Mitch wanted to get on with life and not be stuck at the hospital. Mostly, he was excited to greet kids who knocked on the door and give them candy. Mitch was a tender giver.

So there we were. Mitch just received an echocardiogram. We were sitting with his cardiologist, who was trying to educate us on heart failure. With a light thump of a knuckle on the door, a technician slipped in to hand our cardiologist the results. He paused a moment to digest what was on the paper, then said, “May we speak privately?” Immediately, the already tender lump in my throat ballooned into a boulder. I could hardly swallow.

Laura-Ashley got up to take her brother on a gentle stroll in a wheelchair around the hospital. As the door shut, his already faint smile began to fade into a look of deep concern. “Things aren’t well,” he said with a pause. “A lot has changed since his echo in the spring.” As he began to describe how Mitchell’s heart function declined rapidly, he warned, “Your son is at risk of sudden death.”

Grief washed over me like a title wave. I stood still, doing my best to remain stoic and composed, but on the inside, I was thrashing about and gasping for breath. If I, being a simple father, felt that way – I imagined at that moment how much more my dear wife felt the title wave of grief. For she carried Mitch in the womb of her body and hearth of her heart; she had a connection to our child only mothers know. My heart went out to Mitch and my dear wife, for neither deserved what was before them. My soul yearned heavenward – bargaining to take their place.

About 20 minutes later, after talking about what to do, our daughter and son returned to the examination room – unaware of the new weight placed on our shoulders. My hands were shaking from fear and grief. We did our best to put on a brave face – but on the inside, my wife and I felt like children ourselves – very much in need of comfort. We were desperate to keep our broken boy’s body together while, at the same time, we were falling apart.

What I thought was breaking inside me that day didn’t compare to the shatter I experienced in the months and years that followed.

It’s been 8 years since losing our boy, and I have witnessed the breaking of myself, my wife, children, and others. Whether through death, disease, misfortune, or poor choices, not one of us is spared. Being mortal and flawed, we all break and then pay the price in one way or another.

Being broken can be so many things; it can be toxic, hateful, fearful, or humbling, tender, and beautiful. We all break, but what we do with our brokenness that matters. And it matters a lot. It seems there are two types of people in the world: those who are broken and those that admit it. I am eternally drawn to the people who admit it.

Niels Bohr (a fascinating philosopher and scientist) observed, “The opposite of one profound truth may very well be another profound truth.” On the deepest level, I agree. I often see that principle play out in the world of grief and brokenness. Yes, to break can be devastating, but it can also be beautiful. I can imagine how probably all of us have observed how some broken people tend to hurt other people, but we’ve probably also seen broken people become healers.

Mitch taught me what being broken and beautiful looks and feels like. When I grow up, I want to be just like him. As I continue to discover my own broken parts, which are many, Mitch taught me to focus more on purpose and less on the pain. And when I do that, love and empathy are what I gain.

View fullsize

I took these photos the night Mitchell was released from Primary Children's Hospital. The hospital wanted to keep working on him because, as an institution, that's what they do. But our cardiologists were compassionate and knew better. Their personal advice was to go home as quickly as possible and love this boy with all that we had because the end was coming, and there was nothing they could do to save him.

I'll never forget the look on sweet Mitchell's face when we told him we were going home. In his soft voice, tempered by shallow breaths, he said, "Dad, really? ... I get to go home?" Mitch was relieved and excited. My wife and I were overflowing with fear. We were not doctors; our medical experience was limited to Band-Aids and Neosporin. But within hours, we were given a crash course on how to run oxygen tanks, manage the device that would pump medicine into his heart 24 hours a day, flush his lines, manually administer other drugs through an IV, and more. We were overwhelmed with sorrow, new information, and the inevitable.

Doctors inserted a PICC line that ran from his arm directly into his heart (no small procedure). This line was connected to a little computer that would administer Milrinone, the drug that would keep our boy alive a few more weeks. Without it, he would have become very, very sick within hours. Without it, he would have died rather quickly and painfully.

At the moment this photo [on the left] was taken, I had asked Mitchell if he was excited to go home. His soft smile and loving eyes melted my heart. But inside, I was falling apart. Inside, I was stumbling over the rubble of dashed hopes and dreams. I was trying desperately to feel my way through ashes and darkness. All the while, I tried to contain my fear and emotions so as not to frighten him. I wanted him to be happy. I had to find a way to live in the moment and let tomorrow be.

After he was discharged, Natalie rolled him to the curb – he was so anxious to live his life free of hospital constraints, to reclaim the life he loved so much, to be a little boy again. He had a look of determination in his eyes – an appetite for living I seldom see in anyone. At the time, he didn't know this was a one-way trip. And that trip was the longest, most painful drive of my life.

Once loaded, before we even left the parking lot, Mitchell reminded us it was his week to lead Family Night (a tradition we have once a week to spend time together as a family). We were humbled by Mitchell's desire to contribute, but Family Night was the last thing on our mind. We told him he didn't need to worry about it, that we could do something different instead if he wanted. Mitchell had a tremendous sense of duty. Once he understood a rule or expectation, he lived it to the letter of the law. A more obedient soul I've never known. Mitchell felt it was his duty (a duty he loved) to serve his family.

Two days later, Mitchell would humbly teach a Family Night lesson that focused on love and service. I filmed his heart-felt, soft-spoken lesson. He had prepared some ideas to teach us and games to reinforce what he taught. It was an evening never to be forgotten. Our boy, hanging by a thread, struggling to breathe, put what little energy he had into teaching us about one of life's most important lessons. Perhaps one day, I'll post the video of his lesson to our family. At this moment, my frail son sat on the edge of his couch to share his ideas on love. I was mesmerized. As great as his lesson was, the most powerful lesson wasn't found in his words but in his humble and faithful actions. This little boy, broken and withering away, was magnanimous. I stood in his shadow ... in awe.

Seven years have passed, and not a day passes that I don't reflect on Mitchell's longing for home. Home was where he felt safest, where he could love and be loved. And despite his love for his physical home, a simple touch, a hug, a kiss on the forehead took him home, no matter where he was. Mitchell taught me home isn't a place; it's a condition of the heart.

For the first few years after his passing, my physical home felt profoundly empty without him. There was, and remains, an echo in my heart that will last a lifetime. I don't get to see Mitch when I come home anymore – and I never will for as long as I live on this earth. So, I choose to remember the tender lesson Mitch taught me; that home is not a place but a condition of the heart – and in that way, Mitch is home in my heart and soul. It's not the same, but it's all I've got, and that will have to do.

But alas, there is another home where he now resides. I cannot see it … and oh, how I wish I could. But I have felt it. And it is that home that I long to be.

I took this photo 7 years ago today. We had just left the cardiologist and learned that therapies were failing. Because Mitchell’s heart was in serious trouble, we petitioned for a heart transplant which would be denied a few weeks later. Thinking back on this uncertain and tender time feels like two things at once: like it was yesterday and also a lifetime away.
.
The strange thing about healing is when I look back on our suffering, I see more beauty than pain. 🙏🏼 Its not that the storms of grief are gone, it’s more like I can feel the sun despite the rain.
.
#mitchellsjourney

View fullsize

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.