With a bang the race started. Mitch sprinted ahead of the other kids and quickly realized how weak his muscles really were. He was young and still learning about the limitations of DMD, which were always changing and always getting worse. He looked normal – and heaven knows how badly Mitch wanted to be normal and healthy – but he didn't understand until this moment how quickly his muscles would tire.
Within a few short yards Mitch could feel the punishing effects of muscle fatigue and with each lunge forward he became weaker - he knew he wouldn't make it. Suddenly his face was overcome with grief and worry: grief because he wasn't as strong as he wanted to be and worry that he would fall and hurt himself. I'll never forget the look on my son’s face as he crossed the track lines and ran to the safe harbor of my arms.
I immediately dropped my camera to the floor and ran to my son and gave him the biggest hug between a father and son in recorded history. I then kissed his tear stained face and said, “Oh, Mitch … I love you.” I wanted him to know that my love for him was absolute and unconditional and that his mom and dad were proud of him no matter what. I took hold of Mitchell’s face that was trained on the ground and looked him in the eye and said, “Son, every time you do your best, you win.” I also told him he didn't need to run races on his feet and that was why we brought his scooter. I reminded Mitch why some people use reading glasses – to help them do what their bodies cannot – and there is nothing wrong with that. Mitch used his scooter the remainder of the event - and that made all the difference for him. The rest of the day was filled with smiles and happiness.
We were attending a Sports Day for kids with disabilities, hosted by the Jordan School District. As we participated in the remaining events we saw children with virtually every disability you could imagine. My heart went out to every child I saw. I also realized there were parents there who loved their children just as much as my wife and I loved our son – and there were probably children who, like Mitch, were a little unsure of themselves and wanted to do more than their bodies allowed. I wanted to hug every child I saw and look them in the eye and tell them how much they mattered. I wished then, as I do now, I had the power to heal broken bodies.
After this tender moment with Mitch, my sweet son who tried his best to be like the rest, I began to see the world and my life with greater clarity. I realized anew, when it comes to raising children, their efforts are more important than their outcomes. What’s more, our response to their efforts shapes them profoundly. I don’t expect my children who with untrained hands and barely able to hold a crayon to draw a masterpiece. To the contrary, their heart-felt scribbles are greater than any piece that hangs in a museum hall.
This moment on the track, one warm Saturday morning, I was reminded the depth and breadth of my own happiness are inextricably connected to the well-being of my children. When they are happy and well, I know no greater joy; and when they hurt or suffer, I know no greater sorrow. I was reminded that being a father I am no longer me – for I am the sum total of my family. I am we.
Thus the safe harbor a family should be.
Every time Mitch went to Shriners Hospital he would be taken to a large closet filled with unopened toys and invited to take one home. Each toy was donated to the hospital by generous people and sponsors. The hospital wanted to give kids hope that good can happen to them despite whatever burdens they carried; an enlightened philosophy that hope is medicine, too.
On one occasion the doctor was running late so Mitch was allowed to choose his gift before his checkup. Mitch was so excited to have a toy set that included a bio-mechanical saber tooth tiger that shot plasma lasers from a mountable cannon, an amphibious airplane, two cool army guys and a pylon with a penguin on top. Mitch loved penguins so that was an added bonus. As toy sets go, this was the mother lode for Mitch – and that made my heart smile.
With very few exceptions, I took time off work to be with my wife and Mitch for these hospital visits. I love them both so dearly and I never wanted either of them to feel alone. I knew that with each visit things would be getting worse and I wanted them know where my priorities were … with them.
Mitch quickly opened his gift and wanted to play with me. I sat on the other side of the examination table and we started to have battles. Suddenly the examination table sheet became a frozen snowscape and the blue cushion, icy water. Little Mitch had me be “the guy” as he lunged his saber-tooth tiger toward me. I let him gobble me up and he giggled while I writhed in pretend pain. I had so much fun playing with my son. While I might work to make a living, these are the kind of paydays I live for.
It wouldn't be many years later that I sat on the floor by Mitchell’s bed when he was home and dying. He only had a few days of life left – but we didn't know it. As we sat on the floor, Mitch opened a long, skinny drawer under his bed that was filled with Legos and brushed his hand softly through the disassembled parts pointing out his favorite pieces. He was so weak and so tired; he leaned against me to keep upright and his breaths were shallow. He wanted to play with me but he had no energy. My heart broke for my little son who wanted to live … I mean truly live. I put my arm around him and kissed his head and then suddenly Mitch said, “I love playing with you, Dad.” Tears poured from my eyes. They pour again today.
I’m just an ordinary dad who makes a million-and-one mistakes. I wish life had do-overs, for there are many things I would do differently and better. But I never stopped trying – and for that I have a certain peace of mind.
Although I have made a million and more mistakes, sometimes I get things right. And on this day, at the hospital, and again on the floor by my son’s bed, I got it right; and those are moments of such profound value they are without price.
Mitchell’s funeral was a year ago, tomorrow. I have done a lot of public speaking in my life and there was no address more difficult than speaking at my son’s funeral. Although a year has passed, my knees still shake and my hands tremble from grief.
On the day of his funeral I couldn't believe all that was happening – everything was surreal. The months following I would awake each morning with feelings of absolute horror and breathlessness. I would scramble out of bed in a panic hoping that somehow everything was an awful nightmare. Some mornings, half awake, I would run to his room only to discover it empty- then fall to my knees in utter grief. Not a day has passed that I haven’t wept for my boy. Although I feel an increase in peace these days, I still cry and I still grieve. I think I always will.
It wasn't until we took Wyatt to a Grief Camp last fall that I realized how individual grief truly is. Although my wife and I could love and guide our 7 year-old son through his sorrows, his pain was his alone to process. I couldn't do that work for him … no more than anyone can do the same for me. Later that night I wrote in my journal “After all is said and done, grief is a journey traveled by one.”
I have discovered managing the grief of losing a child is incredibly complex. How does one save another from drowning when they are drowning themselves? As a husband and father I have sometimes found myself hanging by a thread, desperate to tread, while trying to process my own sorrows. I have sensed that grief, if not managed, could easily swallow me up. Yet I know there is more to this equation of sorrow than me. At the same time I see my sweet wife, who aches just as much as I do, and also in ways I do not know – for I am not a mother. I reverence her sorrow more than my own. On top of our mutual grief, I have my other children who each hurt in their own, real ways. I must also care about their sorrows, too.
To be clear, I am not drowning in grief – though I tread its waters and I can tell they are deeper than deep.
I am learning new things about grief every day. So far, I have found if I set aside my sorrows, even if only for a moment, and try to lift and love my family who also hurt, somehow I hurt a little less. Oh, I still hurt - but just a little less. Therein is that heavenly paradox of which I've earlier wrote … that the only way to save ourselves is to save others.
Yet, after all is said and done, grief is a journey traveled by one.
A few years had passed since Mitchell’s diagnosis. We were committed to living a normal life as long as possible; we knew that all-too-soon DMD would take normal away from us and we weren't going to let the disease rob us of today … for tomorrow would come all too quickly. We knew that we would never have now again.
It was a hot summer day when we drove to a fire station and introduced Mitch to the men who worked there. We explained to the firefighters our son had DMD and suddenly these strong men, who were wrapped in muscle and deep tans instantly had a look of compassion on their faces. They went from men of brawn and bravery to fathers who loved and cared. They invited us in and were so kind to our son and family. We told Mitch that not only did these brave men save people and property from fires, they were also trying to save him [and many children like him] from Muscular Dystrophy. I told little Mitch these men are the ones we see with boots in-hand at intersections to collect donations. I remember getting a little emotional as I described what these firemen did to help my sweet boy. Mitch smiled quietly as I kissed his cheek. I miss kissing his cheek.
It didn't take long for these good men to put a little firefighter jacket and helmet on Mitch. The posture of my son’s little hands told me a silent story about how he was feeling at the moment. I could tell he felt timid and awkward receiving so much attention, yet his face told me he felt special. If only he knew how special he was to his mother and me – but alas, a child can never understand the depth of a parent’s love until they become one. Even then, they only comprehend the love they then have for their little ones.
Before long these kind firemen lifted Mitch into one of their fire trucks and described how everything worked. Little Mitch was fascinated.
As we drove home that day Mitch looked out the window with a smile on his face as though he were lucky to have had that experience. I kept looking back at him through the rear-view mirror and couldn't help but think how lucky I was to be his dad. I could tell that experience made him feel special – and that made my heart swell. I believe everyone deserves to feel good about themselves. Everyone.
I couldn't help but feel gratitude for my wife who always looks for ways to expand our children’s horizons and encourages them to experience new things. If it weren't for her diligence as a parent, this experience may have never happened.
There isn't a day that passes that I don’t borrow Mitchell’s words and say to myself, “I’m the lucky one.” Though my legs are weak under the crushing weight of grief, I find myself with treasures of the soul, so-to-speak. When I think of my sweet son and my attempts to rescue him – I can’t help but recognize how he has rescued me. I’m the lucky one.