Tonight's picture was taken on September 4, 2008. Mattie was about a month into treatment and already things were getting overwhelming. So much so that Mattie created a safe space out of a cardboard box. Living in a hospital is not easy and if you have been hospitalized for any period of time you know what I am talking about. People are constantly hovering over you, poking and prodding you, and there is no privacy. Instead a total lack of control sets in. This was Mattie's way of controlling his space for just a few minutes, separated from people and noises.
Quote of the day: Every three minutes in the USA, a family hears.... 'your child has cancer.'
As we are officially into September, the childhood cancer community is now kicking it into full gear to promote facts about childhood cancer and to spread awareness through a go GOLD campaign. As gold is the official color of childhood cancer. GOLD will be publicized through social media, ads, marketing campaigns, and will even be displayed visually. As many advocates work hard to get their local buildings and bridges to light up gold for September. I would have to say whatever awareness has been created about childhood cancer has come from the grass roots level.
I would like to say that seeing GOLD makes me feel better, instills hope, or makes me feel that childhood cancer is getting the attention it deserves. Unfortunately I am not one of the believers in this! Mainly because I have seen very little change or happen on the national level to aid in research or support for children with cancer and their families (a segment typically forgotten). Naturally I think all good change starts at the grass roots level, but other things also need to happen in tandem for true change to occur. Which is why it would make sense for childhood cancer organizations to align and work together. As unity creates strength in numbers. But that is an issue for another blog, as I have learned all too well the dysfunction that exists in our non-profit segment. I am not saying that childhood cancer non-profits hold a monopoly on dysfunction, I am simply saying that when I started in this space ten years ago, my hope was for camaraderie among organizations especially since many of us had a child die from cancer.
I think grief motivates many of us, but at the same time it also makes us all look for our uniqueness, ways to shine, and to therefore keep our own child's memory alive. I do know that any time Mattie Miracle is asked to collaborate with another organizations, I have to do my due diligence to understand the intentions behind the ask because unfortunately in our first couple of years of operation we were burned. However, it only took me one time to get up to speed!
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