View fullsize

Motionless, Natalie stared through our front window for the last time. To say our home was filled with memories would be a gross understatement. This was the same window Mitch would peer through to see Trick-or-Treaters before he opened the door and smiled as he handed other children treats; the same window Mitch would yell out, "Hey Mom, look at the storm coming!" This was the same window Mitch would see his best friends, Luke, Derek, and David, who'd come over to see if he could play. Perhaps most poignantly, this was the same window we saw Mitchell's body being rolled away by the funeral home.

 I didn't know how to comfort my wife – or if she even wanted it. I could tell she stepped into a deep place, so I honored her space and allowed silence to become my teacher.

View fullsize

 Earlier this spring, we sold our home of 15 years; it was time. We only had one child at home, and we felt the gentle tug, an almost spiritual invitation that it was time for a change.

 When I took this photo of my wife, our family was on the edge of a significant change. This was the home we built specifically to help Mitch cope with his muscle wasting disease. We poured concrete wheelchair ramps, customized a bathroom with room enough for a wheelchair, built a caretaker's apartment, installed a wheelchair ramp to our deck, and so much more. In many ways, our home was a symbol of love; we built it not only to raise our family, but so we could catch Mitch when his body fell.

 There was no way of knowing all our efforts would be in vain. We couldn't see into the future and know our little boy would die long before he required any of the preemptive things we did to help him. Yet, I'm not sure those "wasted efforts" matter. I've learned that what we get for our efforts is far less important than what we become because of our efforts. (Henry David Thoreau) At the end of the day, everything we did to help our son was a symbol of love and devotion – and we were changed because of it. Nothing else mattered. Looking back, I do it again. A million times, even to infinity, I would do it again – if not for anything but to know my son.

 So, we sold our home and almost all our furniture. We purged. We simplified. Then, we packed what remained, and we took a big step into the unknown. The days and months that followed were especially difficult for my wife – but we grieved over the change. To us, our home was more than a place to sleep and break bread, it was a living journal, and every corner of that place was filled with richly layered memories.

 We rented a small Townhome in a neighboring city and began looking for our next home. We wanted to move back home (to Herriman) to be close to Mitch and the people & community we've grown to love. Thankfully, we found a place we love. It's different in almost every way. Very different. But we're almost empty-nesters – and soon, perhaps even this place will be too big. Change is good – if not for anything but to remind us that everything is temporary. Everything ends.

 Yet, the longer I live and the further I step back, I can't tell the difference between a beginning and an end. Anymore, they've become one-in-the-same.

 For those who have read Mitchell's Journey over the years, you'll recognize you had a front-row seat to my personal therapy. I was both the patient and the therapist at once, working through my pain one sentence at a time. Writing was, and ever will be, my way of processing. Writing is my therapy.

In the next few weeks and months, I want to share some of the things our family did to process our grief and make meaning of suffering. In addition, I have at least 150 (actual) stories I'm writing about Mitch and the things I learned from him. Also, there are many other things and awakenings that have happened in the past 8 years; I want to write about that, too. I'll still write of grief. But I have so much more to say about hope, healing, and living an examined life.

 Sitting on the edge of change can be bewildering on a lot of levels. What's more, Mitchell's Journey has taught me healing our wounds requires a unique blend of hanging on and letting go. That blend is as individual as our personalities. It's not my place to tell someone what to cling to and what to let go of – that balance is the deeply personal work of the soul. But perhaps, if we can talk about it openly, we can each find our own broken pieces and learn to create a new mosaic of ourselves. Something more beautiful and dynamic than we now imagine.

View fullsize

Earlier today, my dear wife Facetimed me so I could see my little granddaughter. My heart leaped to the heavens, and it hasn't come back to earth yet. I hope it lingers there a while.

How I love this little girl.

I've been absent for the last few months because my family has undergone a significant change. I'll share more of that soon, but all is well with our family, and we are writing new chapters of love, hope, and healing. And oh, what a feeling is healing. Most importantly, I'm back and have stories yet to share; stories of the past, observations of the present, and musings over the future.

I wish Mitch could have met my grandaughter (his niece) in this life. He loved kids, and I know he would have adored her. And though little Mitch is a great way off, sometimes I feel his presence close to me, and my heart skips a beat. I close my eyes and thank heaven that our souls crossed paths and that our stars connected. I thank heaven Mitch was my teacher.

I'm still very much a student of grief and growth - and I'm taking careful notes.

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.

View fullsize

This summer I’ve focused on spending time with my family - so I've been relatively quiet here. I'm not done with writing, though. I just needed a minute.

I don’t visit my son’s place of rest every day like I used to, but I visit him in my heart each day.

Tonight, as I visited Mitch, I felt a gentle peace and deep love for a little guy who turned my life upside down but right side up. That doesn’t mean it doesn’t hurt, it simply means I’m learning to hold hurt, hope, and healing at the same time. And that blend of contrast is like a potpourri of the most sacred aroma.

I’ve been doing something special this summer in memory of Mitch and in celebration of my family. I’ll share that soon. It's been part of my personal journey of intentional healing.

As summer draws to an end, I can sense cooler days ahead. There’s something invigorating about change. Like little Mitch, I’ve grown to love each season for what they are and not complain about what they’re not. In quiet ways, I've grown to appreciate the contrasts of life and those contrasts have become my deep teacher. Summers are never so sweet but when we know its contrast from the coldest winter.

In like manner, I’m grateful for the summer moments of life. I’m grateful for the times life gives us a break so we can rest, heal, and find new strength. Even still, I wonder when the next winter storm will come. I hope it’s yet a few years off, for the warmth of the summer sun has been so kind to my soul.