Tuesday, March 17, 2015

Tuesday, March 17, 2015 -- Mattie died 288 weeks ago today. 


Tonight's picture was taken in March of 2009, around St. Patrick's Day. Mattie received many wonderful holiday items from his care community and as you can see he decided to put all of them on and wear them to his hospital appointment. To me this is the quintessential St. Patrick's Day photo, which is why I typically post it on March 17th.  






Quote of the day: I decided to devote my life to telling the story because I felt that having survived I owe something to the dead, and anyone who does not remember betrays them again. ~ Elie Wiesel


I was invited to Mattie's school today to give a Mattie Miracle presentation to the fifth grade Daisy Girl Scout troop. The troop has selected the Foundation as their project in order to achieve their bronze award. This award is the highest leadership honor that a girl scout junior can achieve. Earning the Girl Scout Bronze Award involves a suggested minimum of 20 hours building a team, exploring the community, choosing a project, planning it, putting a plan in motion, and spreading the word about the project. 

There are many non-profits out there that this troop could have selected, so how did they come to choose Mattie Miracle? Well a major reason Mattie Miracle was selected is due to a young girl in the troop named Livi. Livi is Campbell's sister, and Campbell was one of Mattie's closest friends in kindergarten. Livi advocated our cause and the Foundation with her troop, and she clearly did a great job! We are very grateful for her courage and for giving childhood cancer a voice! Her decision was supported by the troop leader, Sue. One of Sue's daughters is in seventh grade, the same grade Mattie would have been in if he were alive today. Though Sue's daughter and Mattie were not in the same kindergarten classroom, they did know each other. Since Mattie's death, Sue has always supported the Foundation EVERY single year. Her girl scouts raise money through cookie sales and then donate this money to the Foundation in order for us to buy a Lego Raffle basket which is featured each year at our Walk. The girl scouts (different troops, but all led by Sue) have done this for the past four years! In addition, Sue also encourages the girls to visit Mattie's memorial tree on campus and to also make decorations for it especially during the Christmas season. One year they made decorative pine cone ornaments for the tree which were just glorious and special to see. Though Sue did not know Mattie, she is instrumental at helping us keep his memory alive in young minds and hearts. 

I had the opportunity to talk with 18 fifth grade girls today. I have never presented to a group this YOUNG before. Clearly I did not want to scare them, but instead I wanted to partially educate them and motivate them to want to participate in our upcoming Walk. Before I shared my PowerPoint slides with the girls, I started my talk by acknowledging that I knew that childhood cancer is a scary and sad topic. But I wanted to encourage them to look at this more broadly. I let them know that in life each of us is tested, challenged, and is faced with something personally very difficult. A crisis if you will. My crisis was childhood cancer. Each person's will be different. Unlike some people who believe things happen for a reason, or that we are only given things that we can handle, I told them outright that I do not subscribe to this philosophy. Instead, I said that sometimes things just happen. They aren't fair and they don't make sense. In a way they are out of our control. Yet it is under these most difficult times that we can also learn many things about ourselves and we find inner resources we did not know we have. I wanted them to know that they had such resources within themselves. I told them that through my story and photos today, they would hopefully see two things. These two things have enabled me to manage through very difficult times and it is my hope that they take these insights to heart and that it helps them in some way in the future. 

The two things that helped me through such a crisis is 1) community and friendship and 2) being able to help others. I explained to the girls that in times of great sadness and distress, that looking beyond one's self and reaching out and helping others can be very life affirming. 

I shared some basic cancer facts with the girls today. But the majority of my presentation involved a great deal of visuals. I figured this would be a more meaningful and less threatening way to cover material. But it was also a great way to capture our Foundation's activities. I started out with a slide depicting Mattie as a fellow "Saint." "Saint" being the school's mascot. I wanted the girls to know that Mattie experienced many of the things they did at the School and basically he was just like one of them. 

Then I created another slide that illustrated how childhood cancer impacts a whole community, not just one person or one family for that matter. All of Mattie's communities were touched by his cancer..... his preschool, his elementary school, his family and friends, Peter's work, and my work setting. What I wanted the girls to know was that cancer united ALL these communities together for a cause. Communities that normally wouldn't have associated with each other. Many of the people who met each other back in 2008, and were united by Mattie, still are friends with each other today. Even though they now have to cross communities to see each other!

I did not posted all of my presentation slides in the blog, I am only giving you a sample of them. I wanted the girls to understand some of the activities the Foundation is involved in and particularly what donor contributions directly support. Therefore, I highlighted the child life specialist position at Georgetown University Hospital that we have funded for four years, the free snack cart we offer in-patient families at the hospital, the item drives we run twice a year, the monthly nurse support group luncheons we have funded over the last three years, and our awareness work with school groups. This of course only focuses on our local work. 

Then I discussed with the girls how we raise the money in order to be able to accomplish all the things that we do to support children with cancer and their families. That led to a conversation about our annual Walk and all the activities associated with this event. We then discussed ways for the troop to get involved at the Walk and overall with the Foundation. 

I ended the presentation with taking a photo of the troop with our Foundation banner. This troop photo will be featured in our upcoming March newsletter. I also baked cupcakes for the girls. Cupcakes were Mattie's favorites! They were something he absolutely loved and when he was in the hospital, I used them as incentives to get him to participate in physical therapy. Though I did not share that story with the girls today, Mattie was well represented at this meeting through the cupcakes. 

The presentation was held in the school's library. I haven't been in that library since Mattie was alive. I used to volunteer in the library every other week when Mattie was in kindergarten. The librarians used to love me. Mainly because I was super retentive about cataloging and I could do it FAST. As I was in that space again today, it was as if I was transported back to 2007, when I had no idea what childhood cancer was much less what osteosarcoma was..... and I can assure you the world looked so much better through those glasses.