I hate that she feels she has to take risks to live her life. I know a dance recital isn't worth risking your life and I would, never, ever advise my child to take such a risk. I also know that my daughter won't allow the long term side effects of a pediatric brain tumor she had as a baby ruin her present life.
It is a tight rope that she walks. And as she grows up--now 16 years old and 15 years since her diagnosis--it is her tight rope to walk, not mine.
Survivorship, friends, is a hard blessing, sometimes.
I am not complaining--of course--we'd choose survivorship over the alternative. But, I do think people forget sometimes that the very word "survival" comes with the thing you had to survive. And that thing--whatever it is--leaves marks and consequences. Survivorship is not a stagnant state--it requires you to find ways to survive over and over and over and over again. It is a forced way of life. It making daily choices--choosing to give up when a task seems impossible or choosing to shake it off and keep going; choosing to dream small because it is more reasonable or choosing to dream big because dreams are intately unreasonable; choosing to let the memories over take you or choosing to let the memories simply exist.
And sometimes, it is a choice between a dance recital and an emergency room.
For me, the mom in it all, I have a hard time managing the memories. Looking back on the photos from a year ago today, I can spot differences in Lily--but then again--maybe I cannot. I know people will tell me things like, "well, now that I think of it," or "she did seem, off."
But those retrospective perspectives are not helpful; in fact they are so harmful. They make us second guess ourselves. They don't give us knowledge; instead they shake our confidence and dislodge our instincts. To get through every single day, I have to consciously choose to let the memories simply exist.
To do that, I have to sometimes reframe how I tell the story. I started this post with "My oldest daughter danced in her recital last year while her shunt was failing."
But, what I should have written is:
Last year, my oldest daughter danced in her recital. A few days later, she had to have her shunt revised.
My amazing, smart, brave, driven, determined daughter was diagnosed with ependymoma, the third most common type of pediatric brain tumor in 2007. This year, she celebrates 15 years since diagnosis, treatment and her first cancer-free scan. She will always have a shunt; which requires some viligance. She will always have a balance that was impacted by the location of her tumor and surgery. She will always have a right side that is weaker than her left.
She will always always have her bravery, determination and an amazing ability to choose survivorship over all the other things, even when that choice brings hard, painful work. We are so blessed with her and her journey. Happy Survivorship, Lily.
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