Tonight's picture was taken in July of 2009. In fact, I have NO idea where this photo is in my electronic files! I only found it while combing through the blog looking at photos of Mattie and Jocelyn. Any case, as soon as I saw this photo, I immediately downloaded it because I just love Mattie's "Sponge Bob" smile! Mattie knew I despised Sponge Bob, which was why he LOVED the character so much! That day, someone had mailed Mattie this wooden figure of Sponge Bob as a gift and as you can see, Mattie was posing with it! Showing off to me.... just how much he loved this character and how others were supporting him in his choice. To me, this photo showed Mattie's fun side, his humor, his spirit, and his ability to be a kid despite all he was going through.
Quote of the day: Cancer will be with me for the rest of my life, be it as a nodule, tumor or cell someplace, or in my fears and anxieties. ~ Kathryn Joosten
Our Foundation's monthly e-newsletter went out today, and I received an email from my parents asking me for more information about our Ohio trip on Wednesday. They wanted to know what our keynote address was about and basically why was it important for us to go? Especially given that this is only weeks before the Walk, the timing of this couldn't be worse! So what is the purpose of going? I figured since this really was such a good question and if they did not know, then the chances are neither does more people. Other than Peter and I of course!
In the Fall, Peter and I were approached by two groups, APHOES and AECMN. APHOES stands for the Association of Pediatric Hematology Oncology Educational Specialists and is a group of professionals working together to address the educational needs of pediatric hematology and oncology patients. APHOES membership is inclusive of a wide range of disciplines such as nursing, psychology, social work, child life, school and hospital-based education, and medicine.
AECMN stands for the Association for the Education of Children with Medical Needs and strives to serve the unique needs of students with health impairments through raising awareness of their educational challenges, collaboration with like minded professionals, and partnering with similar local and national organizations. This week, APHOES and AECMN are having a joint conference in Columbus, Ohio. Both organizations are very interested in Mattie Miracle's National Psychosocial Standards of Care project and really want to learn more about us, how this project came about, the history of the project, an update, and basically how one would go about starting and managing such just a monumental grass roots operation.
As I always say... Peter and I had a vision. We took that vision to Capitol Hill in March of 2012, when we hosted our psychosocial symposium. We shared this vision with the right people, captured their attention and their hearts and through our determination and their leadership, there is now a band of 50 healthcare professionals from around the Country working on developing a Standards of Psychosocial Care. Most of these distinguished professionals are working on this agenda without compensation. Keep that in mind! If I had more funding, imagine what we could accomplish!!!! In any case, Thursday's keynote address is a big deal, it is worth flying to Columbus for, because it acknowledges NOT only in our eyes, but in the eyes of national organizations that Mattie Miracle has a national agenda that needs to be shared and heard.
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