Supporting Our Cause
I learned in English that if you do not capture your readers attention within the first few minutes, you will loose your readers. It’s why I’m so impressed with authors who can write something exceptional, in the very mundane. A while ago I was challenged to read Anne of Green Gables. I not only read the first book, but finished the entire series. I, a picky reader, was enthralled with the character development.
My wife and I have been training all year to run 100 miles. The story is not about the running though. Supporting our cause has gone much further than that. As I look back, I’m astounded at all the experiences that we’ve been able to share. Most of them are emotional. Perhaps that is a good thing; the more I learn about people, the more I realize that our emotions are what makes us who we are. It’s what makes a skinny red haired girl with braids an international superstar. We can relate to the emotions.
On Saturday, June 14th, at the River Valley Revenge Ultra, after almost 3 hours I was beginning to question my resolve. A fine young lady caught up to me and ran with me. We talked about the race season, and about some of her running goals. When we got to a narrow single track section, she offered to let me pass her, to which I whole heartedly laughed and said, “Are you serious?” She understood what I meant, and so she lead fearlessly on. If she is reading this, I want her to know I tried to catch up and say thank you. I just about did before Rundle Park, but you were fast in Rundle. Thank you for offering me the gift of thinking about something else.
My wife grew up with Duchenne Muscular Dystrophy in her home. When we began having children, I remember us talking about how we wanted to create a family. We had thought about adoption, but as deeply spiritual people, we thought, prayed, and then pondered on each child, before we went ahead with anything.
Duchenne muscular dystrophy is carried in the X chromosome of healthy female girls. Because girls always have 2 X chromosomes, they will almost always have a good copy of the X chromosome containing the gene responsible for the creation of dystrophin, which is responsible for maintaining muscles.
Our two beautiful daughters may carry the disease, and as such may need to be careful when planning their families. Our son Baden inherited the good X. We were prepared for the challenge of raising a boy though. Virginie has two brothers (Lehi and Mathoni) who have since passed away from the effects of the disease. Her mother spent every night faithfully sleeping in the same room with the boys. She would turn them in their beds at night because they were two weak to roll over themselves. Her trained ear had become very sensitive to even the slightest moan.
It’s difficult to describe all the love and service that happened within the walls of my wife’s childhood home. It went beyond being selfless. It was a way of life. Everyone had to pitch in to make things work. When I was courting Virginie I was also expected to help out. I went on a scout camp with Mathoni, the younger brother. I slept in the same tent and turned him and made sure I could help with whatever he needed. To say my upbringing was different would be a gross understatement. I recall being with Mathoni that weekend in a quiet grove of trees helping him go to the bathroom. He instructed me to ‘take it out.’ I turned beet red. I think it made the whole situation even more enjoyable for Mathoni. He responded to me with patience, and with a certain amount of mischievous pleasure in his eyes. Yes, I was successful in performing a ‘pee break.’
When we started our campaign, my wife sent me a song because I was going through a particularly challenging time of my life. I was clinging to anything that would give me hope. It was at that time I first heard our anthem – When We Love. It took no time to realize, this was the song that we needed to use for our campaign. The words, and music, continue to inspire me to this day. If you have not heard it yet, check out our fundraising page and listen. For some reason, notes can portray the feelings of the heart far better than words.
So what can you do? First of all, thank you for reading and thank you for listening to our message. If you would like to do more, please visit our fundraising page. Donate whatever you would like.
When we love someone, anything is possible.
To support the Clossons and donate, please click here.
You can also follow their journey on their blog here.
Virginie and Stephen Closson are taking on the Sinister 7 Ultra in July, in honor of all those affected by neuromuscular disorders. Their theme for this challenge is, when we love someone. Muscular dystrophy is something close to both of their hearts. Virginie’s two brothers had Duchenne muscular dystrophy, and her nephews are also affected. The Clossons hope to inspire others, while raising funds and awareness to support those affected by neuromuscular disorders.