Tonight's picture was taken in June of 2006. Mattie was four years old and we took him to Lake Accotink in Springfield, VA to see the famous cardboard boat regatta. Honestly someone could have described this to me, but seeing it in person is something else. People make boats out of cardboard, decorate them, and then enter them in a race. It is truly a family fun day and Mattie's hope was that one day he and Peter would enter this race and build a boat together. We took Mattie to the race in 2006, 2007, and 2008. I included a link so you can see a snippet from 2013's race. http://www.youtube.com/watch?v=zBN0wrsFKS8
Quote of the day: Keep love in your heart. A life without it is like a sunless garden when the flowers are dead. The consciousness of loving and being loved brings a warmth and a richness to life that nothing else can bring. ~ Oscar Wilde
The day after Father's Day somehow doesn't seem any better than Father's Day itself. Peter was in a funk, yet went to work. Which I am sure is hard, since at work he can't appear to be in a funk. This morning, we met with a young professional who is doing an internship at NIH. She is working for ten weeks with one of the psycho-oncologists Mattie Miracle is working diligently with on brainstorming a psychosocial standard of care. The interview was really to shed light on the history of how the psychosocial think tank for a standard of care was born and developed. Which naturally meant sharing part of our Mattie story, the birth of the Foundation, the mission of the Foundation, and how Peter and I had the vision to vocalize a need for such a standard. A standard that would detail the minimal level of psychological care children with cancer and their families should have access to around the Country. Care that is based on empirical research or professional insights and consensus. Right now, psychological care is haphazard. It simply depends on the cancer institution you are seeking treatment, but part of the problem is such treatment isn't well funded and also different professionals provide this treatment at different hospitals across the country. Which makes standardizing things a bit more complicated, but not impossible! Keep in mind that not every hospital has child psychiatrists, psychologists, or Child Life Specialists on staff!
In many ways when we meet with someone like this professional today who is interested in our story and hearing about our experiences, it is very therapeutic for both of us. These are not conversations we have on a regular basis with people, so when we have the opportunity to have them, they are refreshing. I am sure there are many reasons why this is therapeutic for us, but first and foremost I believe these stories allow us to be parents again. We get to talk about Mattie and share his life, spirit, and battle. After all, when we meet with our friends and hear stories about their children, we can't reciprocate with them. Our story is VERY different, our story is every parent's worst nightmare. So therefore it becomes a story that isn't discussed typically. Which is why meetings like this one today are so special.
A friend shared with me an exposé that CNN highlighted last week about cancer charities. I was intrigued so I Googled the coverage for myself so I could hear it first hand. I attached the link below, you might be absolutely amazed by this story. A story in which people are accumulating MILLIONS of dollars a year from the public and yet the majority of the money is going to pay the salaries of the those doing the soliciting. I think to myself, if we could raise $45 million, like some of these groups, there is NO telling what Mattie Miracle could accomplish. I think it is terrible and beyond unethical that people could accept contributions and prey upon the kindness, compassion, and generosity of the public. Armed with this information, I can't imagine what I would feel like if I had contributed to any one of these 50 unscrupulous charities. We live in a world where we must first verify how, where, and who is using the funds we decide to contribute to a charity. Not all 501c3s are created equal and this video clip illustrates this in spades!!!
Above the Law: America's Worst Charities
http://www.cnn.com/2013/06/13/us/worst-charities/index.html?hpt=hp_c2
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