Tonight's picture was taken in September of 2005. To me this was CLASSIC Mattie. Mattie loved to climb up and down the stairs, not using the stairs, but clinging to the stair rail. At first I was afraid Mattie was going to fall, but I learned pretty early on that Mattie was cautious and did not take on challenges he did not think he could complete. The beauty of Mattie was he always made me see the world in a different way, and after all why go down the stairs in a conventional way.
Quote of the day: There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow. ~ O.S. Marden
On my Facebook page the other day, a fellow cancer mom attached the link below to a blog posting entitled, "As Strong as the Weakest Link." It was a guest posting written by a mom whose child is now a cancer survivor. I attached the article below in case you want to read it for yourself. But in a nutshell, the take away lines that caught my attention were........
"I suppose I created a false reality for the rest of the world."
"I didn’t post about the friends who drifted away, who moved on with their lives."
"Instead, I created a false happiness."
"The truth is no one wants to see a sick and suffering child. It is too hard, too heartbreaking and too emotionally draining."
What caught my attention about what this mom was saying was that she felt she couldn't honestly report how her day to day life was for her, her sick child, and her family while her son was battling cancer. She gave her support community updates through social media but in a way the messages were scrubbed or sugar coated. I absolutely understand her need to do this and also respect the fact that she is now expressing some of the psychosocial issues she faced and my hunch is still does today.
Why do we sugar coat? We sugar coat because if you saw the actual reality of what we witnessed no one would read our postings! I would like to think that when I wrote Mattie's blog (while he was in treatment) that I was being somewhat honest with our support community. But I do know that I typically did not post disturbing photos on the blog (and believe me I could have posted many) and I still remember my running joke with some close friends. My joke used to be that I report about 80% of things on the blog, but the other 20% I kept to myself (I did this because what I would have reported would either be that horrific or in telling the reality or the truth, would have hurt my readers' feelings).
I think as a society and even within the childhood cancer advocacy space, we are so used to just sharing the FACTS. The facts being the MEDICINE, and the medicine only. We seem very cautious about delving into how the medicine makes our child and us feel! Yet these are also vital facts that need reporting because how you are emotionally will translate into how you are physically. Any time a parent sheds light on psychosocial issues and concerns, I want to give them a GOLD star because it helps to break down some invisible myth that these issues are not as important as the medicine or worse that these issues don't exist. THEY EXIST and if we want them treated and managed effectively MORE OF US need to start talking about the psychosocial impact of cancer. We need to give words to the psychosocial pain and long term ramifications of treatment. No longer is it acceptable to stifle these thoughts and feelings, and yet what do I constantly hear parent advocates speaking up about..... the funding of biomedical treatment... in hopes for a cure.
I am perplexed why fellow parents do not promote and advocate for comprehensive cancer care, to include psychosocial care. I am confused because these are the same people who live and breathe cancer and they know how cancer as affected their family emotionally, socially, and psychologically. What's the fear? Or is it that no one has given them permission to talk about these issues freely? Does admitting that psychosocial issues arise make the child/family seem weaker in the eyes of others?
So why isn't this freely discussed. I figure it isn't discussed for two reasons: 1) Childhood cancer is a nightmare of a topic. It is hard enough to talk about the physical issues and the treatment, but adding that the treatment makes children develop mental health issues would be deeply depressing and sad to hear about. We don't handle SAD well as a society and we certainly do not manage chronic and long term issues well either. Which is what psychosocial concerns tend to be. You can't throw a pill at a psychosocial problem, it is much more complex than that in order to produce effective change! 2) The simple and most frustrating reason though is that there is still great stigma associated with having mental health issues. In general society shies away from discussing such clinical issues. But they are indeed very real and also very pervasive in the childhood cancer space. In my opinion the clinical issue to be worried about is not the diagnosis of a mental health problem, but rather the un-diagnosed and festering issues that go unaddressed and misunderstood.
As strong as the weakest link:
https://climbingupthepolkadottree.wordpress.com/2014/09/19/as-strong-as-the-weakest-link/
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