Tonight's picture was taken on October 6, 2007. Mattie was five years old. By that point, Mattie had been attending Fall Festivals since he was one and a half years old. It was a turning point year, because Mattie wanted to go down the slides by himself. In prior years Mattie either refused to go near the slide, or went down sitting on Peter's lap. Back then this seemed like such a milestone, such an accomplishment of courage. Little did we know that the real testament of courage was in store for us 9 months later.
Quote of the day: Let me tell you this: if you meet a loner, no matter what they tell you, it’s not because they enjoy solitude. It’s because they have tried to blend into the world before, and people continue to disappoint them. ~ Jodi Picoult
I love Jodi Picoult's quote. It is so applicable to my feelings today. Not to mention that I love most of her fiction books, for the depth of research on topical areas and her wonderful character development. So what has gotten me so disappointed today? After all, how could I be disappointed when we were just interviewed by a camera crew on Monday for a documentary? All excellent questions, but I would say the pure honest answer is CHILDHOOD CANCER. Mattie maybe gone, but the psychosocial ramifications are alive and well within me.
A few weeks ago, a local high school reached out to me and asked if we would speak at their Faces of Cancer Day. A new concept the school was launching this year to bring real world cancer issues to their students. In fact, the school wants to inspire students to pursue a career in the sciences and felt that students would respond better to those of us engaged in care. Basically to put a human spin on science. Certainly a noble proposition if well planned. However, I was hesitant to participate because I did not feel the school had truly devoted the appropriate time to host such an important event.
With that said, I agreed to participate, because I have some crazy notion that I will get through to high school students, so much so that they will want to get involved in Mattie Miracle activities! However, on some level I do know better. The coordinator of this event, invited us to listen to the keynote speaker of the day. He is a well known medical doctor at a major cancer institution in our region. Certainly aspects of his 45 minute presentation were fine, but overall, I felt that he should have stuck to the medicine and NOT given us his skewed perspective on our health care system. Or better yet not giving students the full picture of how he is compensated (a questions asked of him), as he made it sound like he was directly paid by each patient he treated. Which I know is NOT the reality! So the keynote speaker set me off, and then I went into our break out session in this state.
But it got better. The coordinator told me that the whole high school was going to be participating in this event. Not exactly! Try just the 11th grade. Then she told me to prepare for TWO-20 minute sessions! When I got there, I found out from a student (not the coordinator) that there was going to be only ONE-45 minute session. This may not sound like a big deal, but to me, as a professional educator, I think it is common courtesy to tell your speakers the correct information. Mind you, speakers were NOT allowed to bring in computers, videos, or powerpoint! A major problem when trying to educate children of the technology age!
The keynote speaker talked about ADULT cancers only. In fact, on his bar graph of various cancers, cancers in children weren't even mentioned! They were no where to be found..... maybe they don't exist!????? Peter and I managed through our 45 minute session, but all I can say is wow. There were 6 break out sessions today, in which we were one of them. Students were assigned to sessions, they did not get to select a session based on the topical area of interest. That is problem number 1! How do you engage a teenager who doesn't want to be there to begin with?!
But what bothered me was I know this age group responds to media. Especially on the topic of childhood cancer. Not being able to actively show them visuals of what we were talking about and what we do, really limited us. At the end of the day, what I found fascinating was that no one in the room even said to us..... we are sorry to hear of your son's death. That to me isn't an age specific response, but a human response. So as Jodi Picoult points out about loners.....It’s because they have tried to blend into the world before, and people continue to disappoint them. Totally get it, as after today's experience, I don't want to be around anyone!
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