Saturday, November 2, 2013

Saturday, November 2, 2013

Tonight's picture was taken in October of 2008. Mattie was home recovering from his first limb salvaging surgery (you can see his arm was bandaged up). Halloween was fast approaching and Mattie decided to put on this fancy witch's hat our neighbor gave us the year before. Though Mattie was playing and trying to smile, by this point his cancer battle was beginning to take its toll out on him. It took a large number of props, toys, and distractions to keep Mattie engaged, motivated, and hopeful that we were going to fight and beat this disease. Peter and I worked very hard on this but I have to admit at times what we were seeing and experiencing were heart breaking and if not kept in check could have eaten us from within.  


Quote of the day: Empathy is really the opposite of spiritual meanness. It's the capacity to understand that every war is both won and lost. And that someone else's pain is as meaningful as your own. ~ Barbara Kingsolver


Though I suspect most people are not aware of this, today marked Mattie Miracle's 4th anniversary of incorporation. Meaning we have been a non-profit for four years and today is the Foundation's birthday. It is amazing what we have accomplished in just four years time. I should tell you that after we incorporated in 2009, several other cancer groups felt compelled to tell us that most family foundations like ours don't make it passed the first year or two. Translation, most don't last four years! All I know is failure is not an option, especially when you keep in mind that the Foundation is the organizational equivalent to Mattie in my mind. I may have failed his body, but there is no way I will let the Foundation fail. People learn that quickly about me, because in order to work with the Foundation, you have to get to know me, we have to share a vision, and be passionate about this vision. If we are not on the same page, we most likely aren't going to be working together.

Since we have established the Foundation, we have accomplished a great deal some of which include: 1) paying the salary of a child life specialist at Georgetown University Hospital for three years in a row, 2) sponsoring a monthly support group luncheon for pediatric nurses two years in a row, 3) funding a free snack cart for pediatric families caring for sick children at Georgetown University Hospital, 4) hosting successful bi-annual item drives for families caring for children with cancer, 5) coordinated the first ever psychosocial symposium on Capitol Hill, 6) sponsored the first ever pediatric psychosocial think tank at the American Psychosocial Oncology Society conference, 7) the recipient of a Georgetown University Hospital Special Recognition award, 9) granted a Distinguished Public Service Award by the American Psychosocial Oncology Society, 10) held four successful childhood cancer awareness walks, 11) lecture at local hospitals and universities about the impact of childhood cancer on the family,12) work with several local teen groups, schools, and other organizations to raise awareness of childhood cancer and funds for Mattie Miracle, and 13) we have assembled an amazing team of about 40 psycho-oncologists from around the world to work on our agenda.... which is to create a national psychosocial standard of care.

Happy Birthday Mattie Miracle and may Mattie be watching over all of us!!!

This is a photo of Mattie's room. Mattie had a beautifully large and bright room. But over the years we filled it up and certainly when Mattie was battling cancer things came into our lives faster than I could process them. Months ago if you saw this room, it was filled to the brim. This is what it looks like cleaned out. Keep in mind we donated close to 60 garbage bags of items filled with toys, video tapes, clothes, and books. However, Mattie's room no longer looks like this. Today was the end of an era. All his items were taken down off the walls and everything was covered in drop clothes. It took us over two hours to prep the room to be painted.

Mattie and I were a lot alike. We were sentimental about things and therefore liked to tape things up and display them. All of Mattie's walls were covered with mementos. Which is what made today's process challenging and labor intensive. On this wall were Mattie's class photos and items he created along the way in preschool.

Though Mattie knew I wasn't a Sponge Bob fan, he created this clay version of Sponge Bob in clinic. I think part of the reason Mattie loved Sponge Bob so much was simply because he knew it evoked a reaction from me. Needless to say, Sponge Bob has been looking at me daily for the last four years. Today I took a photo of him and we parted ways with each other.

Peter worked very hard today at scraping this wall paper border off Mattie's wall! I remember Peter and I putting this up in Mattie's room when I was pregnant. It is hard to believe that was 12 years ago! I always thought Mattie's room would be transformed over the years. After all, parents constantly change the style and content in their child's room to make it developmentally appropriate. But I never in my wildest imagination thought it would need to be changed because Mattie died and isn't a part of our physical lives. I don't think anyone could have prepared me for that. Though we are doing this painful task of cleaning out and reorganizing Mattie's room, it is still difficult, it is still hard to accept, and this should not be viewed as just a casual cleaning out process. Quite frankly it is the opposite. It is a huge and monumental deal!