Daily I find myself retelling bits of Lily's story, explaining to someone on the playground why Lily does not move exactly like the other kids, insisting at nauseam that Lily is just like all the other kids, only different, that she is not retarded or slow or "special needs" (this term makes me sick), that Lily is just a kid, who happened to have a brain tumor, and no, we don't know what caused it and no, it was not her prematurity, and yes, she is fine now.
After I explain the bits, I find myself back in the familiar territory of making everyone feel better. Insisting that it was a big deal, but it is no big deal now and yes, it was tragedy, but see, everything is okay. It is sort of the ultimate PR job--making strangers and friends and relatives feel better and hopeful about Lily's health history. I've taken the role of cancer cheerleader--it is like staring in one of those hopeless and predictable inspirational movies about a poor football star or an injured horse. I am the narrator and I have to make sure everyone arrives at a point of being okay with it.
The thing is, I am not okay with it. It is not alright that my beautiful and perfect baby had to have brain surgery. It is not alright that she had to have radiation aimed at her brain. It is not alright that everyday we work and sweat and fight to get Lily to walk and run like all her friends. It is not alright that Lily knows that children get sick and die. It is not alright that somedays I just want to wallow in pity and fear and darkness. And most importantly, it is not alright that 36 children are diagnosed with some form of cancer everyday and that cancer is the leading cause of death by disease in children. It is not okay.
Childhood Cancer awareness month is more than just spreading the word--it is about finding a cure, helping families affected and ultimately, it is about kicking cancer straight back to hell.
This month take a minute to read the stories of inspirational cancer heroes on the Alex's Lemonade Stand website and check the stories of children with brain tumors on the Friends of Jaclyn Foundation's website. Read the stories, be inspired to join the fight, donate generously, spread the word and let's cancel National Childhood Cancer month.
I just want to say that I love you. Lily is such an inspiration and you rightfully deserve to feel like much of what you are going through is not alright. Thinking of you!!!ReplyDelete