I follow Glennon Melton on Twitter. A dear friend of mine introduced me to her blog, Momastery. For the most part, I like her stuff. She is funny, honest, and like the rest of us working to be the best mom she can and doing it in a positive way. I like that. I am also trying to do those things and spend less time in the negative judgey place that leads nowhere good. Today is not one of those days.
A guest blogger on the Momastery site wrote about her son’s autism diagnosis and how it has impacted their family. http://momastery.com/blog/2013/06/20/not-your-typical-mom/
There are many parts of this post that resonate with me. The devastation of a diagnosis that seemed to come from nowhere; the challenge of learning a new language of medical terms and treatments; long-term prognosis; impact on her marriage; caring for a younger sibling. The list goes on and on. I get it. I have been there.
And then, I read this: “I had irrational thoughts. I remember thinking- I wish Greyson had cancer, then there would at least be the possibility that it could go away.” Emphasis hers. And now I am seeing red. I am absolutely seething right now. The Momma bear is out in full force.
My post is not about this woman in particular. I don’t know her or her family. And this post is not about Momastery. I admire Glennon and her work.
My anger stems from the complete lack of awareness and understanding about cancer in children and how far we still have to go. Clearly this blogger knows nothing about childhood cancer. How prevalent it is- It could have been either of her sons or one of their buddies. How dangerous it is- 80% of our kids are STAGE 3 or 4 at diagnosis, thus greatly reducing their long-term chances of survival. How long and draining treatments are- YEARS. How OLD the medicine is and how lacking the technology really is for kids- developed over 30 years ago, for use in adult patients. How much money really goes to the kids- 4% of the NCI’s total budget. Mere pennies when compared to adult cancers. RAWR.
And, that’s the rub. This woman is doing all that she can to get her son all that he needs. She is coping. She has irrational thoughts. I get it. Been there. I remember at the very beginning wishing that our son had been diagnosed with leukemia because I thought (at the time), that that was the “good cancer” to get. Talk about irrational thoughts.
What is dangerous about this woman’s post is the complete ignorance it displays and the number of people it will reach who will blindly gloss over her words about childhood cancer and focus on the part about “the possibility that it could go away.” Some people will read her words and not even see that part. For most people, cancer is treatable. It is something that adults get as a result of their unhealthy lifestyle choices, smoking, or genetic risks. And as a result of the pervasive pink-washing (and soon to be public service announcements about men & their prostates) most people also believe that we are making progress against cancer.
Unfortunately families who have been devastated by a childhood cancer diagnosis know different. We rarely have “the possibility that it could go away.” Instead, we live with the reality that it could come back. It could come back worse than before. If it does, the chances of survival are even less than they were the first time. Instead, we live with the possibility of a secondary, new cancer which could have been caused by the very treatments that were used to save our babies the first time. And for some families, their child’s cancer never went away. It stole their children and they died.
I am frustrated because there are people out there, there are mothers out there, who still believe that their children are untouchable. And even worse, there are still mothers out there who believe that even if it did happen to their child, that it could just go away. Like they can take a pill, or cut off boobs (kids don’t even have boobs), or remove moles that look suspicious and then your kid will be cancer-free.
Mostly, I am frustrated with the childhood cancer community. Yes, good things are happening and there is awareness out there that didn’t exist before. I am thrilled for that. I was part of making it happen. But, I am realizing just how far we really have to go. And, that within the childhood cancer community, we need a stronger, more pervasive message that isn’t about anger or fear (ironic given the anger of this post!). We need to find a way to speak with words that will be heard. I am still searching for them. I won’t stop. I hope, I pray, I wish, I dream that others will be touched by our experiences and join us.
Going to re-focus the rest of today and see GOLD (not red ;))