Lily was around 9 years old when she told me, "No one tells you cancer is forever."
I think about that statement about 3 times a day and have to stop myself from hiding in my bedroom sobbing.
She's spent nearly her entire life in the cancer. First the mystery illness, then the diagnosis and surgeries and radiation and then the after: physical and occupational therapy, MRIs and CT Scans, survivorship clinics and bloodwork and psychologist visits and dental issues and school challenges and physical challenges and I honestly could write a long list and fill the pages of this blog with every single thing my daughter endured and will continue to endure.
I never wanted any of this for my daughter. I wish with every single cell in my body and all the deep places of my soul that this was not the hand dealt to my daughter.
But, I don't get to have that wish and also to wish away the horrors, is to wish away the girl my daughter has grown to be.
Lily continues to have an extraordinary life in both good ways and bad ways. She does not have the privilege or the luxury of ever quitting or every taking the lazy way out. She cannot quit at hard things--because to quit closes doors.
If Lily quits working hard at her schoolwork, she does not just get a mediocre grade. For Lily, any slip ignites a chain of events investigating why she struggled. Does she need an easier class? Can she really keep up? Does she more support? Is there something wrong? Please understand that we don't ignite this chain of events--this is something the world ignites. Often, it comes from a good place--a place of wanting to help and a place that maybe indirectly acknowledge how unfair it is that a baby has to have cancer and then live with the long term side effects of cancer and treatment.
Lily walks a fishing line thin tight rope--one misstep and everything she's worked hard for can come crashing down. Lily has to walk on that tight rope every moment balancing the cancer on one side and the normal on the other.
For Lily, survivorship is a privilege and a curse--she carries those two things as well. I know how much the children who have died have leveled her and how much her latest shunt failure has threatened her hopeful view of the world. But, we remind her everyday the hard lesson that surviving cancer is a privilege and she has a responsibility to take that privilege and live her best life. There is no time to let the curses drown you--when time is not guaranteed.
And I really hope we've done the right things for her. I pray that our tough, compassionate love is exactly what she needs. But, I don't know. I really have no idea. No one gives you a guidebook on the right way to parent your child through a life-threatening disease. There is not a script for managing the teenage years for your childhood cancer survivor.
Our family and our daughter had no choice in this diagnosis. But, we have choices everyday to live fully in spite of it.
In these 14 years, I know my entire perception of the world has changed. I also walk that tight rope--balancing the hope and the blessings that fill our lives with the horrors and fears that have filled in the spaces as well. If I lean too far to either side, my mental balance is lost. I have to live with endless hope, but also be vigilant because like my beautiful girl told me, cancer is forever.