Sunday, September 21, 2014

Sunday, September 21, 2014

Tonight's picture was taken in September of 2007. Mattie was in kindergarten and this was our PRE-cancer days! We had no idea how normal our lives were back then and how lucky we were to just live in the moment without having the heavy weight of childhood cancer on our minds. Mattie loved going on the Potomac River with Peter and that weekend they invited me along on their adventures. They were rowing and I was snapping photos.... documenting the occasion. I am so glad I did! 

Quote of the day: Pit race against race, religion against religion, prejudice against prejudice. Divide and conquer! We must not let that happen here. ~ Eleanor Roosevelt

Peter and I had ONE full day! It started at 5:45am with getting ready to participate in an event on the National Mall. We had many signs from Mattie today, showing us that he was with us. We woke up to a smiling Mattie Moon for one thing! 

Because we were advised that traffic was going to be heavy around the Mall today, we decided to walk from our home to the event and back! Round trip that was close to 7 miles of walking! Fortunately we have a cart to lug all of our items that we needed to set up our exhibit booth! But needless to say, just from the physical stand point of the day.... it was long. Then when you factor in the emotional component of the event.... it felt like we put in a week's worth of work in four hours!

There was great energy at Curefest today. To be quite honest I wasn't sure what to expect with regard to today's event, so I level set my expectations. That way I wouldn't be disappointed. In the past I have been very disappointed in my interactions with other cancer groups and for my own mental sanity have had to disengage at times from these interactions. As a result, I have learned to remain focused on Mattie Miracle's mission and try not to get distracted or swayed by outside negativity. But the beauty of today's event was that the people we talked to were parents and family members. People directly touched by cancer. Not people necessarily running organizations, but people wanting to share a story, wanting to tell us about their child, their battle, their memories, and most of all wanting to connect and relate as PARENTS! In so many ways, what today felt like to me was ONE BIG SUPPORT GROUP! It had a therapeutic component. But of course when hearing such tragic stories and sharing your own for over fours hours..... it is draining!

Now check out this photo! I missed this Mattie sign, but I am so happy Peter captured this on camera for me. First off, I have NEVER seen a butterfly like this. Ever!!! But this fellow landed right on the letter 'A' of our SIGN. Apparently this butterfly didn't just flutter by, he parked himself on the sign for quite some time. He was a conversation piece, as if to tell people... "I'm here, come check out my booth!!!"

I want to help put the butterfly into context for you. The photo up above features our Foundation logo, which belongs on top of our collapsible banner of Mattie! It seems to me the butterfly was looking directly at Mattie! 

Our friends in cancer, Ilona and Attila had an exhibit tent right next to us and they came over and snapped a photo of Peter and I! Our booth featured the following: 1) placards with psychosocial cancer facts, 2) a research poster regarding our National Standard of Care project, 3) FREE t-shirts, 4) an e-newsletter sign up sheet, 5) gold awareness stickers, 6) Mattie Miracle brochures and business cards, 7) rings and toys for kids, and an opportunity to 8) donate. 

The event featured a memory wall of children who died from cancer. Mattie was on the wall!

This was what one of the Memory Walls looked like!

The event featured speakers, entertainers, exhibitors, and a Walk! Peter and I both tried to capture photos of people walking. There was wonderful energy in the air and I got to see a lot of it especially when the crowd passed by our booth! Several people waved, one person told me he LOVED our booth, and the comments just kept coming throughout the day!

Naturally the nature of Curefest is to raise awareness for the biological disease of cancer! Many of the foundations and organizations present today raise money for a "cure." Certainly Mattie Miracle supports the endeavors of these groups, but finding a cure is not part of Mattie Miracle's mission. Our mission centers on psychosocial support, which makes us a VERY unique exhibitor. It also makes us a very unique Foundation. As we interacted with countless attendees today, the number one comment from everyone who came into our tent was that our Foundation is VERY NEEDED and the beauty of those we interacted with was we did not have to explain our tagline. They understand it right away because they know it all too well, childhood cancer is "NOT JUST ABOUT THE MEDICINE!" Any one who has cared for a child with cancer knows immediately that it is the day to day management, worries, and care that stresses children and families out. Cancer is a more complex problem than its physical treatment and unfortunately until you are confined to a hospital room and caring for your own child, I think this is hard for medical professionals to truly appreciate. But today Peter and I could see that we were talking the same language to everyone around us, which was refreshing! 

This was my view as people were walking by!

In fact, the young lady with the yellow hat is Michelle! Michelle is the whole reason I came to Curefest and had an exhibit booth. I met Michelle at Georgetown University in the Spring when I did a guest lecture at the School. Michelle graduated from the University and decided to do some volunteer work for Curefest. She reached out to me and suggested that I may want to participate in today's event. I am glad she suggested it!

This is a full picture of our booth. You can get an idea for all we had going on. I can't tell you the countless stories Peter and I heard today! Some of them were incredibly touching and moving. Several of them were traumatic and I wish I could have advocated for these parents or intervened on their behalf. But unfortunately many of the children have already died. The recurrent theme however of those who lost children is that they are NOT the same, they do not see their lives ever being the same, and many of them are lost, broken, and trying to figure out what to do with their lives! This is a recording in my head that I know quite well, one that others in the outside world do not understand, but the people in this world get very well. Funny how we are surrounded by strangers today who understand us better in this capacity than those who have known us for years! 

Throughout the event I went to visit other exhibitors. One exhibitor, all the way from California, is the CEO and Founder of Along Comes Hope. Jenny and I got to talking and we hit it off. Jenny will be delivering 30 Teddy Bears to Georgetown University Hospital tomorrow. Then I met Shelia from Fighting Cancer with Poetry! As Shelia was talking, she told me she lost her son, Justin, to Osteosarcoma. Justin wrote poetry and she publishes his poetry and her nephew's poetry and donates the proceeds to cancer research. In any case, as we kept talking to each other we realized that we indirectly knew each other through Mattie's big brother, Jey, at Georgetown Hospital. Jey was Mattie's CT tech! Jey always referred to Mattie as his little brother. Jey was very close to Mattie, so much so that when Mattie died, Jey had to stop working in the CT department. Shelia knew about us, as I knew about her and her son Justin! So we were destined to meet!

I end tonight's posting with a photo of me with the co-founders of the Chris Lantos Foundation and their two friends, Joanne and Ildi. The Chris Lantos Foundation just received their 501c3 status, which is well timed as Chris' 14th birthday would have been on September 29. As I told Ilona, this was her first exhibit table and she did an outstanding job! Exhibit tables are very hard to plan and set up for, and a first one is close to impossible!