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.
I appreciate this post so much. Watching Bridget participate in activities without Dylan is excruciating. Dance, cheer camp, soccer, t-ball, kindergarten, the list is feels endless. Everything our healthy daughters do is a reminder of what Dylan can’t and it can often feel impossible to balance the joy with the heartbreak. Thank you for sharing this aspect of Dylan and Casey’s battle. Hugs and love, always.
Michelle, I knew you would be able to relate and feel the same way. It is so hard to watch girls that have grown up together and been so close now have this huge thing threatening to divide and separate them. We are all so thankful for you and the amazing friend that Bridget is to Dylan! ❤️
Powerful and thought provoking. Thank you
Thank you, Linda. I always appreciate your love and support! ❤️
So sweet and sad. I, along with so many of us that love Dylan and the Harrells, have watched this all unfold with prayers, sadness and love. Thank you for sharing yours thoughts and know we are ALL praying for all of you.
Thank you, Carol. We appreciate all the prayers we can get. The support means so much. ❤️
I feel so much pain for the entire family. KNOW how many prayers and how much love is with all your family every day. I can hope that a cure is found in the very near future!
Thank you, Mary. We can’t tell you how much we all appreciate the love, support, and prayers. 💓
Thank you for sharing these all to real feelings. I too felt a sense of guilt that I still had all my children when my sister lost her son nearly 14 years ago. And to this day it lingers, when we are all together sometimes the emptiness in the family is overwhelming. There is a hole that will ever be filled. I’m so glad you are sharing, the mindful choice of joy in moments clouded by loss are powerful. Love you all and pray everyday for miracles and peace.
Thank you for sharing, Mary. It is always helpful to hear about others’ experiences and know that my emotions are “normal” during this. 💓💓💓
This is just beautiful. It is heartbreaking, but also has a thread of bright hope for your daughter. Journaling helped me stay sane and find hope, and insight. This site that you 3 sissy’s share is just invaluable. God bless you, one and all.
Thank you, Judy. There is definitely something very therapeutic about getting your thoughts out on paper. 💓