Tonight's picture was taken in February 2009. Mattie was home between hospital stays and what kept us all grounded and focused were Legos. They were therapeutic for all of us. They had a way of transporting us away from cancer, chemotherapy, surgeries, and psychological pain. Even when it was too difficult for us to talk with one another, we connected through building. The structure next to Mattie was something that he and Peter built together. That year while battling cancer, we must have bought every single Lego kit on the market. Our home had thousands upon thousands of Lego bricks everywhere.
Quote of the day: Age does not protect you from love. But love, to some extent, protects you from age. ~ Anais Nin
While at the booth today, I had the opportunity to chat with many visitors. One woman was a cancer survivor and shared her story of courage with us. Yet she said that when she looked at Mattie's picture, she wasn't sure why she survived and Mattie didn't. I could see she was grappling with that question and also knowing what she endured and survived, she wasn't sure how we survived and are still surviving the loss of our Mattie!
Also while at the booth, one of our psychosocial think tank professionals came up to chat with Peter and I. She had been reflecting on the think tank and also all her interactions with us. What I found so special about her comments was that she observed every attention to detail that we put into our events, marketing material, booth set up, meals we provide our team, and so forth. This made me feel very good, because what she was saying is 100% accurate!!! Details are important to me, and what image we project represents all aspects of Mattie Miracle. Though in comparison to other cancer groups, we are small, I don't want small to equate to unprofessional or ineffective. So her positive feedback made me see an outsider's perspective.
Peter and I attended more sessions today and literally after about almost 24 hours of training since Thursday, we are mentally wiped out. We heard about cutting edge psychological research with childhood cancer and trends for distress screening of children and families. It has been a lot to absorb and take into account and of course we approach all data and research outcomes with Mattie and our situation in mind. As I say to psychosocial professionals all the time..... they may work with hundreds of families over the course of decades, but that still doesn't give them the insight of having the lived experience. I am always amazed when I hear about certain interventions or the way particular studies were designed. I am amazed because I can already tell you whether this will work or not work, why? This isn't unique to me, but most likely would apply to any parent. Simply because we lived it and we know the challenges with timing, the issues associated with intense caregiving, and also living within a hospital setting. What these research studies have verified for me however is NOT all childhood cancer experiences are the same. Based on the type of cancer, the nature and intensity of treatment will differ. This makes a huge difference in the psychosocial impact. Certainly I know this intuitively since most of the families I came across in the hospital did not deal with multiple limb salvaging surgeries, a sternotomy, and a host of other issues associated with osteosarcoma.
As I write this, the think tank and the conference are now complete. Did we accomplish what we set out to do? Most definitely! But my greatest hope is one day I will find some big donors and corporations who will stand behind our work and support the efforts we have the vision to accomplish. It isn't a matter of will it happen, it is a matter of when! Nothing has been handed to Mattie Miracle, it has instead been born out of hard work, focus, determination, and the ability to make connections with the right professionals.
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