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This was Mitchell’s first morning after being released from the hospital to die at home. Though in the comfort of my own home and bed, I didn't sleep well that night – I wept and I prayed for my son to be delivered from the jaws of death. If ever there were a time for hope, this was it.

As I walked into my son’s bedroom I couldn't help but notice how the morning sun shone softly through his window and warmed the color of everything … as if to promise that not all of life is dark and there is cause for hope. 

“For if we, being human, can love our children so intensely, how much more might He love us? I can scarcely imagine. I can scarcely take it in.”

— Christopher M. Jones | Mitchell's Journey

I asked Mitch how he slept and he said in a soft voice “I slept great, Dad.” He was home – and that is where he loved to be. Until this moment I had never considered it possible to be in both heaven and hell at the same time. Yet there I was, in the middle of both… a beautiful agony.

Mitch was tired and weak so I helped him sit up while Marlie was still in his arms. She looked at him for a moment and then gave him a soft kiss. Mitch smiled and hugged his puppy close to his face. He loved having his own baby dog. Marlie had a mission of mercy to perform and for whatever reason she seemed to forget she was a puppy whenever she was near Mitch. This little dog that was no more than 3 months old gave my son much comfort. 

I’ll never forget, despite my profound sorrow, the feelings of hope and peace I felt this day – and many days thereafter. Reflecting back on our time with my son on hospice I have come to understand those moments of peace weren't a promise of deliverance from hardship, but a faint whisper … a spiritual glimpse that all was as it was meant to be and that there were greater forces at work than I knew. So I learned to put faith in that.

I learned early in my life it is not reasonable to hope for a life free of hardship and sorrow. I cannot hope to be the only human exception, exempt from the sorrows of this life. But I can hope the tempest of sorrow and grief in my heart will one day calm. I can hope to find meaning, to search for understanding and experience growth. Those things are eternal and the things for which we can truly hope.

I also hope to see my son again one day. When I do, I will run at reckless speeds to hug him. I will wet his face and his neck with my tears and I will tell him how much I love him. And perhaps, when I turn around I might see the Father of my soul do the same to me. 

I hope. 

For if we, being human, can love our children so intensely, how much more might He love us? I can scarcely imagine. I can scarcely take it in.

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Natalie was on a trip to New York City with some of her girlfriends. I was so glad to see her take a break from all that weighed heavy and enjoy time away with dear friends. For me, being home with my kids was also a treasured opportunity to connect in new ways and spend concentrated time with them. 

The day Natalie came home my kids wanted to write her welcome home notes. We sat in my conference room with a box full of markers, crayons, and pencils and got to work. She had only been gone about 4 days but each of us missed her as if she had been gone 40. And in her absence each of us recognized, in our own way, what a tremendous blessing she was to us individually and as a family; we loved our mom and missed her so.

I remember helping my kids draw and spell and at one point I looked over to see Mitch, who had sat on my table and with tender hands wrote what was on his mind and heart. In his cute handwriting he sketched “I love love love love …. you.” Were you to zoom into this image and look closely, you would see what I’m referring to. I was so moved by what Mitch wrote. He felt that one word “love” wasn't enough to describe how he felt about her. It was such a simple note but a profound gesture of love and affection from a little boy to his mommy.

A dear friend of mine, whose wife also went with Natalie, picked them up from the airport and brought her home. We each came to greet Natalie on the driveway and in the doorway and suddenly our family, which felt incomplete without her, was whole again. With arms stretched we said, “Welcome home.”

When Mitch was diagnosed we sold our home and built a new one with the hope our son could use a wheelchair more easily, when the time came. Between the times we sold our home and moved into our new one, we lived in an apartment for about 2 years and most of what we owned was in storage. I wrote the following in my journal: “Living in an apartment has reminded us of what’s truly important – although I don’t know that we ever lost sight of that. Materialism is a state of mind – not a condition of possessions. We own our stuff - it doesn't own us. And while we have a lot of crap in storage, we aren't itching for it – however, admittedly, it will be like Christmas in the summer when we unpack. Yet, if a tornado or a burglar came sweeping by and it all vanished in a moment – it is only stuff. What is most important is the living, breathing bodies and souls that live in our dwelling.”

My feelings have not changed since I wrote that entry 7 years ago. Home isn't a shelter for things or a place to hoard away the treasures of earth. It is more than a place to eat and sleep. To me, home is a most sacred place – a place to forge the most important relationships we will ever have. 

When I look upon this photo and see my son, whose love for family was overflowing, I can’t help but feel his loss. As my home felt empty without my wife, it feels profoundly empty without my son. I don’t limp about or spend my days licking my wounds or feeling sorry for myself – but I do long for him. I do miss him. And I do cry for him. 

Welcome home. That is what I want to say to my son, but I cannot. And in my heart and mind I write letters to him in the same way he wrote his mom … with the word “love” repeating to infinity. There aren't words in the human language that can express my love for my son and how I yearn for him to be home, with me.

But then again, this isn't really home. Our real home is over there … in that place beyond the hills. And one day I will see my son and he will say to me, “Hi Dad, welcome home.” And I will weep.

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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 - though we relied on them to keep our son alive. Even though our medical experience was limited to Band-Aids and Neosporin, 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. Overwhelmed with sorrow, new information … and the inevitable.

Doctors inserted a PICC line 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 crushed hopes and dreams … trying desperately to feel my way through ashes and darkness. 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 life 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 entire 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 that 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 ... I stood in awe of him.

Not a day passes that I don’t reflect on Mitchell’s longing for home; it was there 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. 

Today, my physical home feels profoundly empty without him … there is an echo in my heart that will last a lifetime. But 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.