It was as simple as me thinking, “What have I done that is really hard for me?” It was very late one October night in 2014, I couldn’t sleep, and this idea kept running through my head, as I thought of how hard every day is for Gus.
I sat at my computer, aimlessly searching for who knows what? Things that are hard? It sounds absurd….but Everest kept popping up on my screen. I emailed my friend Mark, a mountain adventurer, asking about Everest. The next thing I knew, I was securing the domain name, Everest to End Duchenne, and committing myself to something I was not even close to believing I could accomplish.
While I would never, ever in a million years call Duchenne a gift, it HAS given me something that I might never have had without it. It has allowed me to think and to dream bigger than I ever imagined. I dream every day for a cure for my boy, even though it feels so far out of reach. And this rolls over into every part of our lives…instead of the luxury of getting caught up in the day-to-day of making money or getting ahead or planning for a future 30 years down the road, I was dreaming BIGGER.
I was dreaming and believing that I could save my son. And if I could do that, I could also believe that I could trek to Everest. And I did it. Six years ago, you would never have convinced me that my body could do that – especially after coming down off of 15 months of cancer treatment.
But Everest was so much more than proving to myself that I could do it. It was even more than the amazing amount of money we raised. It was the miracle of hundreds of people joining together for our cause, cheering us on, and believing in us. We could feel every single good wish and hope as we trekked those last steps to read the names on the flag of hundreds of boys and girls, living with and dying from Duchenne. It was more than powerful.
But it was also about our team. Seven people coming together for a common cause, and 2 Nepalese guides who had no idea what they were getting in to! Every day on our trek was an exercise in patience, strength, tolerance and love. My favorite thing about the journey was the time I was able to spend with each person – dropping into step with someone and talking for an hour or more. With Brian, I talked about our boys –Gus and Griffin- and our fears and dreams for them. With Kent, we discussed clinical trials and the medical community, he wanted to know everything. With Dave, my friend of 25 years, we reminisced about the past but also discussed our children and our struggles and hopes for them. With Gregg, he enlightened me about Buddhist ways and stories that helped me realize that Gus chose us as his family. Chris – he already knew my struggle and my family intimately, he was a supreme source of comfort. And Anna…my female comrade! She made the trip so fun and tolerated my craziness. Dev, our head guide, held my hand when I was dizzy and walked next to me for miles (on the dangerous side of the trail), and Adhish, always at my elbow to take my poles or carry my pack when I was too tired. Every one of these people was so integral to the journey and I know there were all supposed to be there.
But there were also times of extended silence…when the trail became difficult and we would all fall in line, silent, behind Adhish…with Dev at the rear, watching our every step. These times of silence were when I feel like I learned the most. I wasn’t worried about what was in front of me or behind me; I was free in my thoughts, which never happens in my hurried life. All I had to do was walk. And for the first time, I wasn’t afraid. I didn’t feel solely responsible for my son’s life…I just felt alive. I realized that my job is really not to save Gus. My job is to be his mom and to love him….and a huge burden was lifted.
A Buddhist story tells of how when a child is waiting to be born, they can chose their family. And so they look down, and they choose the family that will give them the best shot at a good life. And Gus chose us…I don’t know why. But he didn’t chose us to save him, he chose us because he believed we could give him a good life. So that is my mission, that is what I learned trekking to Everest, and that is what I will do.