At Kyle's Kamp meetings we have all kinds of plans. All kinds of ideas. All kinds of knowledge to share. I've learned a lot in the last couple of years about childhood cancer. As we talk over each other and our voices bounce off the walls of our little office, we have to remember to keep the focus of our mission in mind. Of course, the ultimate mission of childhood cancer organizations is that we would some day be a useless group of passionate people looking for somewhere else to focus our ideas and knowledge. We all want the end of this road. We want the end of suffering. We want the cure.
There are lots of roads that lead to that place. Many organizations work for patient and family care, many for research dollars, many for scholarships for those heading into the medical profession, some for summer camps for children suffering cancer, and some for specific research into specific types of cancer. In the end, just about every single organization has "AWARENESS" in big bold letters at the top of any campaign.
At Kyle's Kamp when we think of the term "awareness" we refer to it as "making the unknown known". It's not that people don't care about children with cancer. Of course, they do. They just don't know what they don't know. And we have to give them the knowledge. So we type up statistics and we send out emails. We post on social media, we promote rallies and we hold conferences. We scour studies and throw out facts.
*Only 4% of federal research dollars are spent on childhood cancer.
*7 kids die of cancer a day in the United States
*Childhood cancer is the number one killer of kids by disease in the United States
*In the past 20 years the FDA has approved only 2 new drugs for pediatric cancer treatment.
People, I can be in the middle of a serious superfreak meltdown, certain that I am hopelessly lost and yet my car can pretty much find its way all by itself to any darn baseball field in Virginia. If I can't remember the name of that guy that sat behind me in math class in 7th grade, it's highly likely that within an hour, I will be able to find out not only his name, but also the names of his wife, his children, his pets and whether or not he flipped out when Russell Wilson threw the ball on 2nd down instead of handing it off to Marshawn Lynch. And yet, children with cancer in 2015 are often times receiving the same medicines that children did in the 1950s. What in Sam Hill is up with that?
This kind of knowledge can make me coconuts, but honestly, it is not the statistics, the facts, or the numbers that nag at me in the night.
Because that's the head knowledge. And, y'all. I'm a woman. I'm a friend. I'm a mom. I don't deal in head knowledge as often as I deal in heart knowledge. And it's the heart knowledge - the knowledge that I've gained from the relationships I've formed that has settled in and taken root. The knowledge learned from looking into the vacant eyes of grieving moms and sitting in funerals with teenagers and watching faces of big, strong men crumple in despair. It's a knowledge that I can't unknow.
I can't unknow the suffering. I can't unknow the damage the death of a child does to an entire family. The way it threatens the strongest of marriages. The way it irretrievably shifts the dynamics of siblings by forcing a middle child to become the oldest or leaving a twin to suddenly navigate the world alone. I can't unknow the image of a gaggle of ballplayers, who after years of playing Little League together, will take to the frozen field today to tryout for their high school baseball team without one of their own. I can't unknow how a young man had to go to his high school orientation a few weeks ago without his best friend walking beside him. I can't unknow how worry settles in any time one of the children I've met who are in remission gets a fever or a cough. I can't unknow the nurses I've met. The one who puts on a brave face and works for long hours and days and still finds the time to drive hours in the icy rain and traffic to a funeral home to hug the parents of a child lost. I can't unknow an entire community of cars lined up for miles and officers blocking streets, all for a 13 year old's funeral. I can't unknow the look on my son's face when I tell him that I don't know how to explain that I still believe that God heard our prayers and loves us more than we can imagine even if He didn't answer us the way we wanted Him to. Even if.
I am aware of horrible things now. I have some limited knowledge of what it is like to watch a child go through chemo. I have some limited knowledge of what it is to watch a child suffer cognitive effects of radiation. I have some limited knowledge of Hospice and palliative care. I have some limited knowledge of what it is to have strangers come and take your child's body away from your home. And I really did think that it would be that knowledge - the knowledge of the ugly things that as a mom, I can hardly wrap my head around, that would haunt me the most as I lay awake at night and pray for my new friends.
But out of all of the things my friends have shared with me, it is the simplest of words that a mother speaks that are the most difficult for me to forget.
"I just miss him," she whispers, "I just miss him so much."
It is so simple and yet so impossibly complicated. My friend deeply, desperately misses her child. I can talk to her of faith and the end of her child's suffering. We can discuss heaven and beauty in the ashes and counting blessings and making each day forward mean something. We can talk about making a difference for the children who are fighting now. We can lobby and raise money. But I cannot help her stop missing her child.
It is the simplest, most painful knowledge of all. This knowledge that she misses her boy so very, very much. This knowledge that the missing will not end. This is the knowledge that I cannot ever unknow.
Image from quotepictures.net
Jenn Skinner is a Christian and a Texan(Texas Longhorn to be specific!) living in beautiful Virginia with her very patient and funny husband and her 3 very impatient and funny little boys/ball players, She joined the fight against Pediatric Cancer with Kyle's Kamp in 2013. She also writes about just about everything and nothing and the ridiculously abundant life God has gifted her at her blog, The View From Behind Home Plate