This picture was taken several days after Mattie's second birthday party (April of 2004). For each birthday party that Mattie had at our home, I would cover the front hallway wall with paper, mazes, and other activities for the kids to color and draw upon. Mattie loved the fact that he could decorate the wall and felt extra special that such an activity occurred on his birthday. As you can see in this picture, Peter got home from work that night, and as soon as Mattie saw him, he engaged Peter at his coloring wall.
Quote of the day: No one ever told me that grief felt so like fear. ~ C.S. Lewis
I chose to spend the day by myself. I really wasn't in the talking mood, I did not feel like listening or absorbing what anyone else had to say to me, and I most definitely felt the need to retreat.
Despite how I was feeling, I accomplished a lot. I went for a three mile walk and then I spent the rest of the day reaching out to other organizations and businesses that may be interested in our Foundation's missions and activities.
As many of our Walk attendees know from past years, we have an impressive raffle, filled with incredible items, at the Walk. Our raffle chair is my friend Carolyn, whom I met at Mattie's preschool. Carolyn's daughter and Mattie were in the same classroom together, the year that Mattie had Margaret as his teacher. I am working with Carolyn this year to generate items for the raffle. The whole soliciting experience is not something that I like doing, yet I have found after doing a couple, it gets easier to ask for things.
Needless to say, I spent a good portion of the day in front of the computer. At times I get frustrated because I find the pediatric cancer community, which is comprised of associations and other private entities to be petty. Petty in the sense these entities believe they have a certain niche and turf, and at times I feel that their turf is more important than the issue at hand. Our ultimate goal should be to help children and families with cancer, yet behind the scenes so much more is going on. So I would say aspects of this work can be disillusioning. Mainly because I would like to believe, call it idealistic, that people are in this field because they have the passion, a desire, or a calling to help. When I realize this isn't always the case, this upsets me. There is no unified and powerful voice in the pediatric cancer community. Because of this, I think this helps to explain why NO new drugs for pediatric cancer have been FDA approved in over 20 years. It also explains a host of other problems. When I combine being disillusioned with reflecting on Mattie's loss everything becomes overwhelming.
In the midst of all these realizations today, I was able to reconnect with several of the women I networked with yesterday at the Georgetown Parent Advisory Board meeting. Many of these women want to support our Foundation Walk, and I appreciate these connections and the opportunity to learn from many of them on how to run a successful Foundation.
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