My father and I were big into sports. He often coached my teams as a kid, and he never missed a game I played or skipped a practice. Even when it wasn’t his favorite, my passions became his passions. I was eager to share all the things my dad and I enjoyed with my own child, and from the moment our son Hawken entered the world, I’ve loved being a dad. But in 2002, my perfect 5-year-old boy was diagnosed with Duchenne muscular dystrophy, a muscle-wasting disease with no cure. I was at a loss.
Hearing the truth about his disease was tough news to take. There was nothing to treat Duchenne back then except for steroids. It was just me and my wife and this beautiful child on a journey with no roadmap. Little boys at that age are either running or sleeping, and we quickly discovered that groups of people, especially children, couldn’t understand why Hawken struggled to keep up. Trying to hold his friends back instead of running ahead was as much a challenge as managing the stresses of the day so that Hawken wouldn’t overexert.
One day, I just went into the garage and dumped all the sporting equipment. After all, my own father had supported my every interest, so in that moment, I decided to do the same for Hawken. I would focus my attention on the things Hawken wanted to do, and we would do them together. That day set the tone for an unmatched closeness with my son, and more than 20 years of wonderful experiences together.
Early on in Hawken’s life, we discovered the benefits of physical therapy, massages, and stretching to care for his muscles. We’d watch Glee or American Idol as I stretched his muscles to keep it light and open. Stretching was almost a truth serum. That time together created a safe zone that broke the ice for us to talk about anything. It opened a doorway to a closer relationship I would build with my son as we tackled the world together.
Though Hawken wasn’t able to participate in sports, I wanted to bring that team atmosphere to his life somehow. Being part of a team is an important aspect of developing relationships. Joining Boy Scouts helped do that for us. Together, our two-man team found a way to do the same things all the other kids did – even a 7-mile hike up a mountain with a 1000-foot vertical gain and Hawken on my shoulders. Although Hawken couldn’t technically do the hike, he was on the hike. What’s more, I think he inspired the rest of the troop.
I have a fantastic memory of our Colorado river trip. We put our canoe in at Hoover dam with the rest of the group and headed downriver between the towering rock walls. Self-contained in our canoe, we were just another father-son pair in the group, coasting through caves and braving the waterway as the river twisted and wound. We built a bond through adventures like this. We developed trust to travel further and a desire to explore the world.
When Hawken was in high school, I chaperoned his class trip to Iguazu Falls in Argentina. Iguazu is one of the most majestic and memorable places I’ve ever been, but Hawken’s power chair wouldn’t make it through the maze of steep wooden staircases and walkways that lace the falls. Lifting him up on my shoulders, we crept down the treacherous wet stairs, laughing about the likelihood of slipping. We passed charging waterfalls and patches of heavy mist in the rainforest to the most spectacular views. Hawken would later tell me that he, “thought we were going to die.” He noticed that we’d marched right past a sign that read, “Nobody shouldered or carried down the steps.” But we made it – surrounded by water cascading behind rainbows, and the rest of his classmates.
“Aut viam inveniam aut faciam” translated from Latin means, “I will either find a way or make one.” This quote is attributed to Hannibal of Carthage, uttered before he marched war elephants from North Africa over the Pyrenees and then again over the Alps to invade Italy. How we handle adversity is a choice, and there is always a solution. What I found most valuable is a positive attitude and a sense of humor. I try to find humor in even the darkest of times. To some, it may appear flippant, but it’s helped me to deal with Hawken’s adversity and to show him that he’s loved in so many ways.
These solutions are by no means able to eliminate the challenges of life with Duchenne for my son, however, they present opportunities to experience father and son adventures. We have found ways to be involved and participate.
We are fast approaching 20 years of life with Duchenne. Yes, I have my moments of grief, but I am a dad that relishes every moment and gives it my all for my son. The adversity isn’t going away anytime soon, but neither is our commitment to joy and adventure. No one really knows what the future holds, but what I do know is that I will be the dad my son needs me to be.
I have learned so much about being a father from my son. I discovered that my role as a father doesn’t have to be prewritten or etched in stone. We’ve been to 13 different countries together, and now that he’s an adult, I feel more like his wingman at times. Of course, Hawken’s hot take is, “No son should have a father as his wingman…”, but he might be thinking of a different kind of wingman at his age. Wingman or not, I’m looking forward to a road trip through the Great Plains towards Minnesota one day soon with him.
Happy Father’s Day to all of the dads out there who have either found a way – or made one – so that their kids can experience their best life.
– Paul Miller, aka Hawken’s dad