Tuesday, November 8, 2011

Tuesday, November 8, 2011 -- Mattie died 113 weeks ago today.

Tonight's picture was taken in November of 2003. Mattie was a year and a half old and this picture reminded me how our whole first level looked like a preschool back then. Mattie transformed our life both in tangible and intangible ways. As I was searching for a picture to post tonight, I came across this one and it made me pause. I remember those chubby and angel soft cheeks so well. This was one of Mattie's favorite things to do, he loved to put his cheek against mine. It was such a sweet and innocent connection, and as today marks our 113th week without Mattie, this is just one of many, many things that I miss.

Quote of the day: Breathe. Listen for my footfall in your heart. I am not gone but merely walk within you. ~ Nicholas Evans



I began the day by going to my zumba class. I did not go last week because I was in a funk about Halloween. Though I am new to this class, it was absolutely lovely to know that people in the class care about me. When I did not show up last week, I got an email from the teacher as well as from my friend, Heidi.

It was good to jump around today and after class, the teacher, Jenny, and I talked about the upcoming Foundation Walk in May. Jenny had some great ideas about how to integrate zumba into the walk this year. I look forward to brainstorming this activity with her, and once you hear the theme of the walk, you may understand the connection that came to my mind immediately today while we were talking. In either case, joining zumba was a very good thing for me to do this Fall. It not only helps my mood, but has connected me with some lovely people.

After class, Heidi invited me back to her house and we chatted and she made lunch for us. The irony is Heidi's house is not far from one of the playgrounds Mattie used to play at with his buddy, Zachary. Since I was a little girl I can always recall my mom's fascination with houses and architecture. In fact, we went to many open houses and toured through several neighborhoods while searching for all the houses we lived in. Unlike most children, I actually found this activity fun. I was interested in design, layouts of homes, and particularly interested in the things people put into their homes. Maybe because these items tell me a lot about their owner. After all, a house takes on its owner's personality and interests. I enjoyed visiting Heidi's house, the colors and her artwork spoke to me. As I continue to try to clean out all the things that have accumulated in during Mattie's illness, I always appreciate being in my friends' homes which seem happy to me and untouched by the death of a child (thankfully!).

Heidi and I had lunch on her porch and we chatted about all sorts of things. But the thing that Heidi's conversation reminded me of today is that I may have once been a mom, but I gained a lot of perspective from my seven years with Mattie. Having been a mom, gives me insights I would never have had otherwise. Heidi and I share the same religion and she understands my struggle that I am having with my own faith. When you lose a child, I have noticed this either brings parents closer to God or further a part. For myself, I have experienced anger and disagreement with God's decision to take Mattie. I also can't grasp a God who punishes children and their families so intensely. Mattie's death rocked my understanding of reality and therefore it also broke down many of the philosophical underpinnings in which I have lived my life in the past. Heidi however asked me an interesting question today. She asked me if I believe God determines our fate or our destiny? Stepping back from the question, my automatic answer was no. I believe God walks with us during good times and in bad, and that he doesn't necessary control our destiny, but is instead with us on this journey. Growing up Catholic, this philosophy was easy to verbalize, but it is a much harder philosophy to embrace and to absorb when things truly go awry in one's life. I have to figure if God is a loving and merciful one, then my questioning and disillusionment will be understandable in his eyes. For me this is part of the grieving process.

This evening, I attended the parent advisory board at Georgetown Hospital. The last meeting I attended was in May. Then the board takes the summer off and reconvenes in September. However, I was traveling in September and October and missed both board meetings. I loved the president of the board last year, but she resigned. She and I were the only members on the board who had lost a child at the hospital. It is very difficult to sit in a room with parents whose children have all survived their battles. In any case, at tonight's meeting a parent who is inpatient with her daughter was invited to the meeting. She was asked to come in and talk about her experiences living in the hospital, the good and the bad. As this mom was talking, I immediately related to her because she is spunky, articulate, and a good advocate. However, while she was talking she kept referring to me and said that I could probably speak to the topic she was addressing. It never dawned on me that she knew who I was. After the meeting was over, she came to find me. She told me she reads the blog and in addition, she wanted to let me know what a huge difference the snack cart and the new childlife specialist are making in her and her daughter's life. She said, "you have certainly given back to the hospital in incredible ways." This is a comment I will hold onto and remember dearly. This is the TRUE reason Peter and I do what we do, we want to make a difference in the lives of those who fight the childhood cancer battle each and every day.