Thursday, March 15, 2012
It's been a long cold lonely winter.
Jack and his two friends from High School and I just got home from the US Burton Open at Stratton. I am not sure what I was thinking tossing three HS boys in the car, loading up the Thule and heading north. Normally I would not take that crew to Jerry's (the local Rye spot where everyone knows your name). I did it and I am happy I did.
Jack is home, he is not in the hospital, he does not have a picc line, he is not heavily medicated. I made up my mind early on in this fight, when he was diagnosed with Cystic Fibrosis, that we were going to live life well when we had the chance. The snow was outstanding. The boys spent most of their time in the terrain park. You needed a special pass and I was so not invited. We all watched the top snowboarders from around the world compete.
It was the 30 anniversary. Burton is sick. Burton the founder of the US Open, the founder of Burton boards, native from Vermont. Everyone came. Kelly Clark, Gold Medal winner. Hannah Teter and Shaun White. Now it's been a while since Shaun has come to the open. Some at Stratton say he commits, gets hungover and backs out. I just think he has a jet, homes and better places to be (although I cannot imagine anywhere in the world that is better than Stratton). He came. They came to thank the Burtons for all they have done for the sport.
I came because we could. When your child has a terminal illness that they have yet to find a cure for, you live differently. We do, we live for today. We make it count. We go to the US Open. I think I enjoyed watching Shaun White more than Jack. I stood at the bottom of the half pipe simply shocked by magnitude of his talent.
Now my son Jack has been on his board since he was 5. He started skiing at four. This because one weekend we took Sam and Jack to Vermont, checked them into ski school and for the first time in so many years, I was free and I skied. That weekend I rented a house for the following season and enrolled all three in the seasonal program at Stratton, the Mountain I skied at since I was 8. Jack at the beginning of the next season announced he was a snowboarder. Tears tumbled down my cheeks as the dream of my spending the season skiing at Stratton seemed to fade. I called the ski school and told them the news. Jack wanted to snowboard. Now this was ten years ago and there were not that many little kids on boards. Happily Cindy, head of the program said "Mrs. Clark whatever you bring him on, we will teach him on."
So his boarding career began. And my love for skiing is stronger than ever. I have so many memories of that mountain and the times I spent up there. And now I am building even more.
When your child is sick and in the hospital you sit and wonder, will he go to Vermont again, will he skateboard again. Am I gonna walk out the doors of the hospital with him?
My fear is that I just do not think I will ever be able to go back there. Back to a place I love so much and feel I belong without, him. Because now all my memories there are tied up with Jack.
I was told today I was ruining Jack. I was not hard enough on him. How can I be? I have watched this child spend nights in the ER, weeks in the hospital, Picc Lines, IVS, No Food, stuck everywhere, stuck 15 times in row to get an IV going, put under four times. I could go on. I have watched him fight, fight for his life. I am in awe of his strength and courage as I am Shaun White's performance in the half pipe.
He is my son, and I love him with all my heart.