Tonight's picture was taken in October of 2006. Mattie got this little pumpkin at his preschool and carved it himself. He was very proud of his accomplishment and we put a candle inside of it to display this cute jack o'lantern. With Mattie all these moments had a great deal of excitement attached to them. You can almost feel the excitement in his smile.
Quote of the day: What I like about photographs is that they capture a moment that’s gone forever, impossible to reproduce. ~ Karl Lagerfeld
As I was preparing power point slides for the conference we are attending next week, I was going through months of photos. Photos from the time Mattie was diagnosed to when he died. Why? Because the nature of our presentation is to discuss the quality of Mattie's life and our life, pre-cancer to his death. It is through understanding our quality of life or lack there of, that one will see what inspired us to advocate and have a vision to develop a national standard for psychosocial care. Certainly Peter and I will talk about Mattie's quality of life as well as discuss our own, but to me photos have a way of capturing the essence of what is being conveyed and doing it justice in a way that remains very memorable! I can verbally state that Mattie was sad, depressed, or exhausted to an audience! But a photo that illustrates this leaves quite an impression. In fact, once I finish the slides, I may upload them to the blog so you can understand what I am talking about!
In any case, one of the slides in our presentation discusses the quality of life Peter and I had in the hospital. I created a photo collage on this slide and one of the photos presented is this one! You maybe asking yourself, what is this? A field with Canadian Geese! So what does this have to do with cancer and Mattie's care, much less our quality of life??? Well actually it has a lot to do with it. On occasion, Mattie would get a room like this that had a window that overlooked the field. This was the GOOD view. Some of the other rooms had windows that literally looked out onto a brick wall! Totally depressing. However, in many ways this field view was equally depressing to me. It was depressing because while we were trapped inside watching Mattie undergoing painful treatments and other horrors, I could see college students outside on the field practicing and playing sports. They were living and healthy!!! It was very frustrating to know I couldn't control Mattie's disease or our life. It showed me how different my world was, and I did not like it. This view brought me great sadness and showed me what I was missing and it was a constant reminder of our differences. All of this impacted my quality of life in a subtle way but it was pervasive as it clouded my mood and outlook. I needed the window open to get natural sunlight/daylight into the room, but Mattie really did not want the curtain open. He tolerated my needs, but you can see why he wanted to shut out the world. When you feel different and are different, sometimes you need to protect yourself from further hurt.
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