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.
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.
True to the Make-A-Wish tradition, Mitch had just thrown his coin into the wishing pond. I don’t know what he wished, but whatever it was, I hope he got it.
Everything seemed surreal back then. Mitch appeared so normal at the time and the effects of DMD were all but invisible to the untrained eye. We almost felt guilty going on a Make-a-Wish trip because he wasn't profoundly sick. But we saw the storm clouds on the horizon, we knew what was coming and decided to make the most of what strength he had. The decision to go then was a blessing we wouldn't appreciate until it would have been too late.
After little Mitch threw his coin in the water I sat on the edge of the pond then grabbed my son and gave him a big hug and kiss. Wyatt wanted in on the love and I hugged and kissed him, too. Not a day passes that I don’t show and tell my kids how much I love them. Not a single day.
Mitch was a little overwhelmed by all that was happening. As far as he was concerned, he was pretty-much normal and he wondered why everyone was making such a fuss about him. But Mitch didn't know what the doctors knew – that the path that lay at my son’s feet would soon become treacherous and one day his path would end.
When I was younger and envisioned my future, my heart wasn't set on having a big home or fancy cars; I just wanted children to call my own. I wanted to be a father. I have had many professional titles in my life and none of them mean as much to me as father. I would sooner hear the word “Dad” from my children’s voices than any title or accolade the world could offer. I would give up everything I have if that meant I could be a father for one more day.
There is a saying that goes: “the real measure of your wealth is how much you’d be worth if you lost all your money.” When I look at my wife and children I feel like I’m the wealthiest man on earth. And if love is a measure of real wealth, than I am rich indeed – and I will spend the rest of my life sharing it in word and deed.