The morning of November 16, 2002, we received a phone call from our son’s pediatrician confirming that our only child has Duchenne Muscular Dystrophy.
Six years earlier, my wife Debra and I were preparing for the arrival of our son, Hawken. As first time parents, Debra and I enjoyed our time together talking about all the things we would do as a family. All the things we would teach our son. Those special times seem like a completely different lifetime. All those hopes and dreams were crushed on November 16, 2002.
We had to adjust and rebuild our hopes and dreams. We were and still are committed to not letting Duchenne rob us of joy in our lives. I’ve loved being a Dad from the moment our son entered the world. In fact, it is my most favorite thing to be! “Daddy hold you,” is an early memory I will hold onto forever. I relish every request to fix something, play something, answer a question and do something.
Initially, that fateful day in November, caused me to think that much of what I had to offer as a Father was diminished. The opportunity to play catch, do other physical activities together and coaching sports were lost. Although, there have been adjustments, I have found where one door has closed, others have opened. I am constantly coming up with solutions and workarounds to be able to participate and do as many things as possible together. In other words, I get to fix things so that they work.
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. My son knows that if there is something he wants to do, there is a will and we will find a way. I think that’s what dads do!
We have been executing this strategy ever since November 16, 2002. It is not always successful, but what is? Our adventures and life lessons for my son are numerous.
We are fast approaching 17 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 the 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 am a Duchenne Dad!