Wednesday, January 11, 2012Tonight's picture was taken in January of 2009. We took Mattie to New York City for the second time, to begin an experimental treatment at Sloan Kettering. The treatment was started at Sloan and then through a compassionate release program, the remaining dosages were given through Georgetown Hospital. Before Mattie began treatment, we took him to some of the wonderful sights of NYC. Though it was cold out, Mattie enjoyed the boat ride and passing by the Statue of Liberty. Caring for a child with a major disability provides great challenges, however, trying to do this in NYC was double challenging for me. Getting Mattie in and out of taxis was a feat and just moving at the quick and lively pace of NYC made life with cancer much harder. However, Peter and I worked hard at sheltering Mattie from these stressors and we particularly were aggressive about protecting his feelings especially when people looked at him like either he was a physical misfit or worse with great pity.
Quote of the day: As human beings, our greatness lies not so much in being able to remake the world as in being able to remake ourselves. ~ Mahatma Gandhi
Gandhi's quote is quite profound. I think it takes great effort to remake one's self. First that alone requires one to develop introspection into one's life and how one is being with the world, but second it then requires energy, will power, courage, and commitment to achieve this make over. Self change is hard just in general. If you doubt this just ask anyone who is addicted to a substance or activity, or ask someone who is trying to lose weight, or even ask a mom or dad who is having trouble parenting a child. Yet through self change or by remaking ourselves, it is miraculous to see how others (or the world) around us also change.
I know for me, having to remake myself after Mattie's death has been challenging, stressful, and at times disheartening. Mainly I guess because I did not ask for this change. I spent a great deal of time getting my education and working in the mental health field, and yet how I saw using these experiences and credentials no longer interest me. I have been forced to re-evaluate myself professionally as well as personally, and I believe Mattie's death has sometimes made me pause and ask why bother?
It was another grey and rainy day in Washington, DC. I met up for lunch with my friend Tina and we had a very stimulating conversation about fundraising ideas for Mattie Miracle. Over the course of the last month or so, she has been generating a list of ideas for me to consider. I appreciate this brainstorming because unfortunately right now the Foundation does not have a staff. Peter and I are the staff and at times it becomes a juggling act to try to create and generate ideas, while at the same time running programs and maintaining the administrative side of running the Foundation. I am always open to new ideas and certainly new connections and possibilities. It is through new connections that the 5% Whole Foods day came to our attention. In the midst of talking ,Tina and I had the good fortune of being treated to homemade chicken soup at a local restaurant. It was the perfect meal for a damp and cold day. In a way, like other people talk about their children or work, my equivalent is talking about the Foundation. The Foundation is my job, but it is also requires nurturing. I appreciate Tina being able to see that.
Tonight, Peter and I had dinner with Jerry and Nancy. Our favorite music volunteers from the Hospital. We met them during our first week at Georgetown Hospital. Mattie's first week of chemotherapy was scary and stressful for all of us, yet when Jerry and Nancy came into our room one evening and started playing their keyboard and singing, we all forgot our problems! Mattie loved the music and as time passed, Jerry and Nancy created a Name that Tune game for Mattie which he loved. The cute part was that Jerry wanted Mattie to feel good about his singing and his participation, so Jerry would email me ahead of time to consult on the songs he would select for the game. He wanted to make sure whatever he played that Mattie actually knew the song and would be able to win Name that tune! So in essence we met this talented twosome in 2008, and we have been friends who periodically get together every other month or so for dinner. Another special connection in our lives thanks to Mattie. Several of my readers have asked me about Jerry and Nancy and I do want you to know that Jerry and Nancy are just friends, they are not married. They met and supported each other at the hospital when Nancy's son and Jerry's niece were undergoing cancer treatment. Cancer united them and once their family members went into remission, they wanted to give back to the hospital and therefore have been musical volunteers for several years. A rather touching story!
I would like to end tonight's posting with a passage from one of the undergraduate student reflection papers, "The Mattie Miracle Cancer Foundation project was the first time in my Georgetown career where I actually applied myself in a very positive way. At the start of the project, I was very excited and nervous at the same time. I didn't know how everything was going to turn out. When Vicki and Peter came to speak with us, I was very nervous when thinking of the semester long project. As they showed us the presentation the day they came to speak, things got very emotional and the entire room was just in complete silence. Actually going to the Lombardi Cancer Center and seeing the kids there made me grateful for the life I have. I didn't realize how good I had it. After complaining about this and that, it was a real humbling experience to go over to the hospital and see everything that was going on. This realization allowed me to really put my all into this project. Doing something for a greater cause really brings people together. Before this, I had never experienced anything like this at Georgetown before. I am grateful for this wonderful opportunity."
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