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.