I'm at my family ranch in Southern Utah this weekend and all I can think about is little Mitch. Aside from home, this was his very most favorite place on earth. If asked whether he’d like to go to Disneyland or the ranch, his answer was the ranch every time.
Everywhere I look I am confronted with beautiful but terrifyingly vivid memories of him. Every nook brings back visions of days gone bye that play out in my mind like an 8mm film. Each memory exacts an emotional toll that’s exhausting.
Mitch was so excited to go here this summer – we talked about it often. The two of us even had plans to make a fort in the back woods and sleep there. Mitch had the place picked out and was so excited to camp with me. Knowing his excitement to be at the ranch, combined with my longing to hold him in my arms … there is a strange heaviness in my heart.
I took this photo a few years ago as Mitch was crossing this bridge at the ranch. At the end of the bridge was his cousin who lovingly encouraged him. A regular child would have run across this with little effort; but for Mitch, who had DMD, this was both difficult and scary. And as much as he wanted to do what the other kids were doing, he was afraid because his muscles were weak and uncoordinated. The risk of injury was very real for him and he knew it. But Mitch did it anyway ... which made his act of courage all the more awesome.
If he can do hard things, so can I.
Sometimes I get the sense that Mitch, like his cousin in this photo, is waiting on the other side of the bridge of life … unseen … silently cheering my family on. This little boy of mine, whose life was cut so very short, has me wanting to complete my sojourn on this earth with the same bravery, dignity, and honor that he did. And while I stumble about my own journey across, I hope when my legs are weak and soul heavy with sorrow, that I will stop and listen to the quiet heavenly impressions that all is well and to press on and return with honor.
About a week before Mitchell was admitted to the hospital a package was delivered containing ~120 hand-written messages on paper hearts from concerned friends and neighbors. They had heard the news Mitchell’s heart function (EF) was operating at 5% and that therapies were not working. In an effort to lift our son’s spirits, these friends and neighbors, with charity in their hearts, wanted to show him how much he was loved.
Mitchell was so touched by all of the thoughtful comments from people; some he knew, many he didn't. I could tell by the look on his face he was confused why everyone was making such a fuss about him but that he was genuinely curious and touched by what everyone had to say. These notes meant a lot to him. Not a single heart was overlooked. He read every one of them - on more than one occasion.
Fast-forward a week and Mitchell was fighting for his life at Primary Children’s Hospital. We weren't sure he would even make it home. But, through the faith and prayers of many we believe we were blessed to get him home and love this little boy with all that we had.
These photos were taken on the same Monday evening Mitchell taught his Family Night lesson on love and service. Just after his lesson I asked if I could take his photo with all of the hearts. He was very weak and tired and I knew I had a small window to do this. So we made haste, shoved the couch to the side of the room and quickly put the hearts in a circle around a small stool. He was such a good sport about it all. After the photo he stood up, lifted his arms and started to shake his hips and do his happy shimmy.
As sick as this little boy was, he found joy.
Over the last year Mitchell would take note of certain milestones of loss and point them out to his mother. He would say, “Mom, that’s strange, I can’t get up from the floor anymore.” Or, “Mom, I used to be able to get off the couch by myself, now I can’t.” He noticed the things he used to do with ease were either impossible or becoming very difficult. On occasion his losses would make him sad, but he would soon brush it off and find happiness with whatever remained.
I often asked myself why a little boy who was finding himself able to do less and less would somehow find more and more happiness. I then remembered a great saying: “gratitude turns what we have into enough.”
Mitch had gratitude for the smallest things, and because he was grateful for whatever he had, he always found a way to happiness. A sunset, a song, a funny photo, or just being around family … these made him happy. Because he always turned his focus to gratitude, it didn’t take much for him to erupt into some spontaneous expression of joy.
A few days after these photos were taken I was giving my son a bath; Mitch was telling me about one of the video games he was trying to beat and his next strategy to turn a corner in the game. After a while he pointed to his PICC line (seen in this photo in his right arm) and would say what a pain it was to have. Moments later, after having thought about it, he said, “well … at least I’m alive.” In that very moment I was overcome with emotion. Swallowing the basketball in my throat, I held back my tears and told him I’d be right back. I quickly left the bathroom, turned my back to the wall and slid to the floor trying to catch my breath. I wept like a child.
My experience with Mitchell taught me that trouble will come to all of us, whether we like it or not. It isn't possible to live in a state of constant joy - that is impractical and unrealistic and turns a blind eye and deaf ear to God’s purposes. And while it’s easy to pontificate the virtues of adversity … to academically talk of trials as a divine teacher (which they are), I find myself choking on the sheer size of this bitter pill.
Yet even in our deepest sorrows we can find our way back to joy when we’re grateful for the things we have. The bitter taste of sorrow is what makes genuine joy so sweet.
Despite the profound sorrow of having lost my boy, I have experienced some deeply spiritual impressions that have been equal to or greater than the sorrow I have felt by his loss. These feelings of joy come like flashes of light. They are exceedingly momentary, but they are real.
Today I am grateful … grateful that I had Mitchell in the first place. I am grateful for my wife and three other children, who are everything to me. I am grateful for my dogs, my home, soft pillows and for fresh air. I am grateful for all that I have.
And while I may stumble and trip over pain and sorrow, I will not lose sight of the things that remain. The path to joy is gratitude.
In April 2013 we were approached by a dance instructor who was seeking permission to choreograph a dance in in memory of Mitchell. The theme of the concert was Inspirations ... each dance dedicated to a figure or ideal they felt was inspirational. Evidently, her students were aware of Mitchell's story and he was at the top of their list. We were touched by their thoughtfulness and gave them permission to move forward.
Last night my family watched their first performance and it was beautiful. We were deeply touched that these dancers, each young and with a life ahead of them, would stop and reflect on Mitchell's story and illustrate it with such an expressive art.
Just before this performance, I found my hands shaking, unsure if I could keep it together. Tears of sorrow, tears of gratitude and love flowed.
I remember looking to Wyatt only to find him weeping because he missed his older brother so much. He was so touched by the dance.
It occurred to me on the drive home how much Mitchell loved to dance. He would spontaneously break out in an awkward little shimmy because his muscles were weak and getting less coordinated. But he would dance anyway - he didn't care - because he was happy and felt safe and loved. Whenever he danced my heart would explode ... he was so cute to watch. We have been able to capture his little dances of happiness on video and will share them some day.
So to watch these students of dance tell his story and journey home was humbling. And then, later, to reflect on Mitchell's love of life that he often expressed through his own little dance ... I was humbled and reflective. This choreography ... this art of music and movement ... took on a much different meaning.
To the Dance Company, Creative Arts Academy and the students of Jefferson Jr. High School, we thank you from the bottom of our hearts; not only for the beautiful tribute to our fallen son, but for the reminder that life is still good and we should dance when we're happy ... even if we can only shimmy.
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.