Tonight's picture was taken in June of 2003. I took Mattie to the Reston Zoo, which has a wonderful petting zoo for children that Mattie loved! It was small, cozy, and very hands on. All perfect for Mattie. One of the animals Mattie enjoyed visiting was the sheep... it always was an adorable encounter.
Quote of the day: One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the vital element for the growing plant and for the soul of the child. ~ Carl Jung
Soon after Mattie died, Peter and I participated in this type of event in the Spring of 2010. Which is how we began to lobby in the childhood cancer space. The following year, I continued to participate and met my fellow advocate and friend, Annie. Annie lost her daughter to cancer and we immediately gravitated to each other back then. Now four years later we are still friends, we connect with each other whenever Annie comes to DC (since she lives in Southern VA) and we sat next to one another today discussing issues.
Peter and I truly enjoyed Annie's company...... sharing thoughts, ideas, and feelings about the sessions! I snapped a photo of one of the pages in the program which clearly lists Mattie Miracle as a partner organization of the Alliance.
Research funded by the NCI has played a role in every major advance related to cancer prevention, detection, and treatment, as well as contributing to breakthroughs for many other diseases. Progress for childhood cancers is even more dependent on NCI funding. In addition, the NCI provides children with cancer access to clinical trials and care at NIH-supported research hospitals. While there have been remarkable advancements in lowering mortality rates for some childhood cancers, the rates for other childhood cancers remain stubbornly unchanged and even have increased over the past ten years. Given the private investment in pediatric cancer research is extremely limited, it is imperative that the NIH and NCI continue to work for new treatments and ultimately, a cure for childhood cancers.
2) To co-sponsor the Childhood Cancer Survivorship Treatment, Access, and Research (STAR) Act of 2015. The STAR Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year.
My faithful readers my recall that I began working with the Alliance on their round table legislation work in the Fall of 2014. This work continued into the spring of 2015. The end result of the work is what helped to generate the STAR Act. So it very meaningful to be a part of a process of watching how this has unfolded within the cancer community from brainstorming, work groups, to now an introduced Act with sponsors.
One of the highlights of my day was working in the children's activity room. I suppose that seems like a rather odd statement from a mom who lost an only child to cancer. Most likely many people would think I would be running in the other direction from small children. This room was open for seven hours, and I only worked in the room the last 2.5 hours of the day. So by the time I got to the children they were already wired, tired, and ready for the day to be over. Since I was coming into their space, I had to get to know them, their personalities, as well as understand what kind of style the other adults had in the room (since there were two others in there with me, and one who had been in there the entire seven hours!).
Pretty early on, I noticed two young boys because of their style of playing. I was entertaining a two year old on the floor, and one of these boys came up to me and was pretending to throw a ball into my face. He made this motion several times at me. I did not move, nor did I scream, I just told him that his actions weren't appreciated. So he moved on, but I made a mental note out of it. Later on, I caught this same boy playing with the second boy, but this time they got a hold of a hand full of ballpoint pens and were poking each other with the pens. The other adults did not seem to have a problem with it, but I most definitely did. I put up with the rest of their rough housing, but poking with pens was my limit. So I finally went over to the boy who tried to hit me with a ball and I asked him what his plan was? What was going on with the pens and that I did not think this was a great game to play. He gave me some explanation, but I basically said..... NO, play with something else. They complied. Minutes later more rough housing went on and the boy who tried to hit me with a ball came running over to me to show me that his plastic name tag ripped off his lanyard ribbon. I am not sure how he thought I was going to react to that, but he seemed upset. I told him he did not do that on purpose and that there are always ways of fixing things. Of course there was no tape in the room! But I started thinking outside the box..... and took him to the sticker table. I told him to pick out two of his favorite stickers and he did. I put a sticker on each side of the hole, covered up the problem, and fixed the lanyard. He was thrilled, but then I saw his name. It was Matthew. I told him, he had a beautiful name, and between fixing his name tag and telling him I like his name, I made an instant friend. That was my first buddy.
My second buddy was a bit more complicated. My second buddy, was playing with Matthew and two older girls in the room. They were playing some sort of defending a castle game underneath the tables in the room. The tables served as the castle. The problem was some kids were allowed in the castle and my second buddy wasn't allowed in, which caused hurt feelings. In addition to that, the way that the children defended the castle seemed to scare and bother my buddy and as he said "it was too violent." I had to break up their arguments several times, but the last straw was when I found this little fellow sitting silent and ready to break down in tears. I knew that sign very well. I knew it well because this child reminded me greatly of Mattie. It was his nuances, how he expressed himself, his insights about others, and his sensitivities. I could actually predict what was going to happen before it would happen, and that is only because it was as if I lived the scene before with Mattie. It was a very surreal scenario. In any case, as he was getting upset, I caught him. I said to him, to stop and use his words and tell me what was going on. So he proceeded to tell me, and it involved the girl under the table. So I had her listen to him as well, since what he was saying was making perfect sense. He wanted to play, but he did not want to play so "violently (his words)". She kept telling him that was the nature of the game, because it was a war game, but I tried reasoning with her especially since she was twice his age and he clearly looked up to her and wanted to play with her. I was looking for her to come up with other solutions or a compromise. But she wouldn't. Which only further frustrated my buddy. At which point, he literally bolted from the children's activity room into the hallway of the hotel. None of the other adults were mobilizing forces, but I ran after him. I got a hold of him and asked him where he was going, MIND YOU HE WAS ONLY 6! He told me he was going to get on the elevator and go to his hotel room. Of course he did not have a key to get into the room, so that wasn't realistic. He was just upset.
One of the other adults who had been in the room all day with him, suggested I bring him back to his parents who were in training in the room next door. But I frankly did not think that was a good idea given the state he was in, and instead decided to try to talk with him and work it out. I was able to convince him to come back into the Children's Activity room, to calm down, and as we continued to talk, I told him that I understood he was upset, frustrated at his friends, but at the same time I was impressed with him. Instead of pushing them, fighting, or saying bad words, he was able to use his words and talk through his thoughts and feelings with them and with me. I said I was proud of him and that he gets a high five. Which he liked and smiled. With that, Matthew came over and I asked Matthew and my second buddy, Scott, whether they would like to play together? Which is what eventually happened.
At the end of the day when parents came to pick their children up, I want you to know that both Matthew and Scott, out of their own will both came up to me to thank me for being a part of their afternoon with them. Matthew even shook my hand and wished me a good rest of the day. Naturally this experience made me very happy because I enjoy nurturing children, but on the other hand it also made me deeply sad because the reason why I have the skills that I developed was because I had Mattie. Mattie was my best teacher and though my skills and insights remain, his absence continues to leave a very large chasm in my life that other things don't fill.
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