Tonight's picture was taken in May of 2007, in Dutch Wonderland. A themed park for preschoolers in Pennsylvania. The irony of this photo was prior to entering into preschool Mattie was deathly afraid of slides! Yet look at this enormous slide he and Peter went on together! You can't see the top of it, but it was high, tall, and long! Mattie loved it and wasn't scared in the least. Mattie had a great time visiting Dutch Wonderland and it was that weekend that I could see he simply loved the thrill of theme parks. You either love them or you don't! I don't, and Mattie did! We were alike in SO many ways, this was our one distinguishing difference.
Quote of the day: It's not whether you get knocked down, it's whether you get back up. ~ Vince Lombardi
Yesterday when Peter and I arrived at our hotel in Columbus, Ohio, people were getting off at the curbside by the BUS LOADS! I had never seen such a thing. As if a whole conference of people were pulling into town and staying at our hotel! Well literally this was happening, a conference was occurring at the hotel, but it was no ordinary conference! It was a conference of MY LITTLE PONY! Now I knew my Little Pony the toy. I saw it before while toy shopping for Mattie, but to my surprise..... who was carrying the stuffed animals, wearing the t-shirts, and dressed up as ponies????? Adults!!! I was introduced to a new term, a BRONY! A brony is an adult interested in My Little Pony! I included a website that explains the following so you know I am not making it up! These folks are very serious about their passion, and frankly they were so entertaining to watch that I wanted to pay the registration fee today and join their conference!!!
http://whatisabrony.com/
Peter and I presented today to an audience of maybe close to 75 people. Over the years our style has changed, which is bound to happen as we grow and develop. In the beginning, back in 2009 and 2010, we were deeply grieving parents and really we used the forum of presentations to be heard more than to professionally advocate for the work of Mattie Miracle. Now however, we are the faces of the Foundation. As such, YES we are compelled to tell the story of Mattie and share his battle (because ultimately Mattie's battle guides our mission, goals, and objectives of the Foundation), but we walk a fine line. We need to do this in an appropriate manner. If we present and break down, look weak, fall apart, then guess what? Our message as a Foundation is lost, doesn't get conveyed, and worse it doesn't portray the image I am hoping Mattie Miracle has.... which is that of a compassionate leader with a vision to hopefully advocate and work hard so that we can achieve a national standard of psychosocial care for all children with cancer.
Why am I saying all of this? Well I am saying this because sometimes now when I present, I find it harder to know whether I am getting through to people! In the earlier days, when our emotions were MUCH more raw, it was MUCH more obvious to me that my message was getting across and people were listening. Now not so much! But here is my earth shattering observation from today!!! After our presentation we migrated into smaller working groups. It was in the smaller group time and throughout the afternoon, people came up to talk with me. One on one! It was in these one on one chats that I could immediately see based on what was being said to me that people understood our hour long message! They perceived just how challenging, and I mean emotionally challenging this work is for us, and several people even acknowledged how difficult it must be for me to hear survivors of childhood cancer talk today. That is a whole other conversation and blog topic, but yes this psychologist was absolutely correct.
The audience at the conference was comprised of medical doctors, nurses, psychologists, chaplains, educational specialists, and other psychosocial support professionals. It was a very diverse group who are used to the topic of cancer and yet it was clear to me that death and being around parents who lost a child to cancer did make them uneasy. It is hard to know how to deal with people like Peter and I! Professionals don't know how to deal with us, so why should mainstream society?!!! I think it was harder for the group as a whole to focus, interact, and ask us questions in a larger forum setting. But one on one, people were more inclined to talk about our loss and to also ask us questions about our standard of care project. A project which seemed to really get a lot of interest and attention today.
This is my second time visiting the Columbus airport this year and this advertisement gets me each time I see it! I snapped a photo of it today to show you! I think it is starling! First of all it is enormous, you can't miss it in size alone. But honestly I have been to a lot of airports all over the Country, and I have yet to see such a profound and prominent ad for cancer! Not only did we see this ad, but today as we drove to get to the conference, we actually had to drive passed the James, which is the Hospital featured in this Ad. The facility from the outside was as equally as impressive as the ad. I really like so much about the ad, from the captivating eyes of the woman looking at us, to the fact that she is telling us that at the James she feels that she is treated not like a number, but as a unique individual who has cancer. That is where the ad should have ended! Then in the fine print, it goes on to talk about a team of "researchers and oncologists are working together to CURE your cancer." That is where it LOST me! THERE IS NO CURE for cancer. Any oncologist who tells you they can cure your cancer, should be a BIG RED FLAG in my book. Once you have cancer, I am not sure you are ever truly CURED! You may be so lucky to have NO EVIDENCE OF DISEASE, but you will always have to be monitored and to some extent you can have long term effects from treatment. So I think layman use the term cured, I am surprised to see it used in this way by a well known cancer treatment center.
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