Watching my daughter and several other six-year-olds practicing their leaps in ballet class, one can’t help but be filled with joy. They each have been given a little cone to jump over, turning this into a game and heightening the fun. The energy and exuberance in the room make me smile and laugh as they bound over their cones.
Simultaneously, I am fighting back tears. Tears for the one who isn’t in class. Who sits at home, unable to leap, twirl, or even walk. Two cousins (“sister cousins” we call them), seven months apart, should be taking this class together and leaping in harmony.
DIPG. The thief that has stolen yet another opportunity from a girl, a cousin, a family. My sister and I should be sitting in the ballet studio together, laughing and smiling as we watch our daughters. Instead, I often have a pit in my stomach when it’s time to take Penny to ballet.
It’s not just the physical limitations that hurt. The psychological effects are just as bad, possibly worse. Feelings of missing out, knowing that the changes in Dylan’s body are holding her back from the life she should be living.
It is hard to choose the joy in this situation. Honestly, I am bitter and angry that Dylan isn’t dancing. I feel guilty that my healthy daughter is. Why Dylan, I often wonder. I constantly wrestle with feelings of angst and worry as we try to navigate the cards that our family has been dealt. I acknowledge these feelings and realize that unfortunately, this is our current situation. I am angry and upset. But I also choose to be grateful that Penny is able to do ballet.
I would otherwise take these leaps for granted as part of childhood, but now I know they are not a given. I am so much more aware now of the many children that have been robbed of these opportunities. I choose to remain hopeful that someday legs will work again and DIPG will be curable. But in the meantime, one sister cousin leaps alone, and I feel simultaneous joy and sorrow.
