The past two weeks have been a blur. I struggle with even knowing what day it is.
This morning I woke with an “epiphany”. I don’t want to live the last days of my daughters life with grief. There will be plenty of time for that when she is gone. Maybe that is why I have always been “stellar and strong”. You won’t see me crying in front of her. I am always trying to keep things happy and uplifting. Always.
But these last few weeks it has been very tough to keep things positive.
I was asked earlier this week, by the organizer of the Manteno St Baldricks, to come up with something to say at the event this Saturday. You see, all of us cancer parents are family. I know what all the other survivor families are feeling. I was them not too long ago.
When your child finishes treatment and is deemed “cured”…..you have a sense of relief followed by a whole lot of guilt (for the other families not so lucky), fear (for the unknown because childhood cancer never truly goes away) and gratitude (that your child has made it through this hell of a roller coaster). But you keep most of this shoved deep within your heart. Not only for your own sanity, but out of the respect to those who are not as fortunate. The angel families.
I want to share a comparison……imagine giving birth to a new baby, but the day before your best friend, or sister lost their baby. That is what a survivor parent feels. Every single day. How can they not??? They have been through some of the darkest days of their lives and now they are pushed out into the world……into the normal. There have been many children that have passed over the course of these past 11+ years of Zayla’s cancer journey. And each one made me feel as if it was a personal attack. Maybe it’s the realization that we are all so close to that reality. Maybe it’s just the fear. Either way, a little bit of my heart and soul would be chipped away at seeing another child die from cancer.
Thing is…..although I am wanting to live these days and not grieve the past and near future, I find myself growing angry. All the “if onlies” run through my head. I so desperately wanted Zayla to survive long enough to get her forever cure. We tried everything to help her get to that point. But it wasn’t enough. And once again, another child is going to die as a direct result of cancer.
None of us asked to join this club called childhood cancer. But here we are.
It is time for people to stop just being “aware”. Do something. Make children a priority. Show your outrage that children get so little money for research.
As I take care of my dying child….I want you all to think about it. Feel it. And just imagine. It could so easily be your child. Your grandchild. Your friend. Or your neighbor.
Childhood cancer is bigger than one damn month. It’s bigger than one event.
Yesterday the Daily Journal did an article on Zayla. One thing was missing. What can people do? My family doesn’t want anything except one thing……a cure to childhood cancer. The only way that is going to happen is if people step up. And not just the parents, close friends and relatives of these cancer kids. I’m talking everyone. If we are a nation that can spend millions on campaigning for office…..we are a nation that can spend billions on innocent children. Because children’s lives matter.
If you want to do something…..start a fundraiser- it can be anything from car wash to donations to an event like St Baldricks, to taking your lunch to work for a week and using the savings to donate. Just do something.
Today is the annual Sy Baldricks event in Manteno. Today, Ms Zayla will not be able to attend, and that hurts my heart just a little more.
Go Team Zayla!!!
Love & Peace~