Tonight's picture begins a series of shots from Halloween 2008 that I will be sharing with you this week. This particular photo was taken in the childlife playroom of the Hospital. Pumpkins filled the room that day, and Mattie got to pick one and decorate it. You can see his creation behind us. Mattie felt that his pumpkin person needed a cape, so magically.... as only childlife folks can do, one appeared for Mattie. I honestly do not know what happened to this pumpkin because it wasn't allowed into the unit. Nonetheless, it was an activity which Mattie enjoyed, and with all of his art projects, it got us both engaged together creating, and distracted us from the reality we lived in 24 by 7.
Quote of the day: It is such an act of optimism to get through the day and enjoy it and laugh and do all that without thinking about dying. What spirit human beings have! ~ Gilda Radner
I do think that Gilda Radner was absolutely correct. The spirit of children is remarkable, and when in doubt of this I invite you to visit a pediatric oncology unit at your local hospital. The irony is we as outsiders are the ones who are scared, frightened, and depressed over the sights we see in these units. However, the children are just that. They are children. Despite life altering diagnoses, horrendous treatments, and incredibly debilitating side effects, these children smile, laugh, they want to have fun, and most of all they are the picture of what living is supposed to be about. They face each and every day, and all the uncertainty that comes with a cancer diagnosis, with grace, excitement, and a naive form of energy. But what is startling is they do not dwell on dying. You may be saying in reaction to reading this...... well that is because they are children, and they do NOT understand the notion of dying! I once would have agreed with you, but after watching Mattie, who was only seven, I have concluded that children DO understand death. They understand dying, and in Mattie's case he was MUCH more clued into his dire situation than I was. This INTENSE form of optimism, resilience, and joy for living were NOT constructs I actually observed and felt before Mattie had cancer. Spending 15 months in a PICU was a life altering experience, an experience that I would equate to our soldiers coming back from a war. I lived making life and death decisions for Mattie for over a year, I saw things that many people probably do not see in a lifetime, and therefore it is no wonder that integrating back in the daily world with daily stressors seems absolutely intolerable and foreign to me.
This morning, I heard a song by Chris Morgan entitled, "This Ain't Nothing." I had heard it numerous times before, but for some reason today the words captured my attention. The song opens up with a man whose home has been demolished by a twister in Alabama. All you can see is devastation on the video. Naturally we would expect this man to be in shock. But he isn't! He isn't because he tells a reporter that he has experienced the death of his dad, brother, and now his wife of 50 years. That is SOMETHING! The rest is NOTHING! Time and money can replace what he lost in the twister, but the death of his loved ones is not correctable, fixable, and no amount of resources is going to make this problem better. I couldn't have said it better! I attached a link to the song below in case you are interested in seeing the video.
http://www.youtube.com/watch?v=eSdItuvBxc8
I began my day by walking. I walked 3.39 miles, and have begun to try to jog periodically in my routine as well as do stretching exercises. The initial five minutes for me of getting started is always hard, and I usually begin by feeling exhausted. It would be very easy to want to quit within the first few minutes, but I try to push through that feeling. Today was a partly cloudy day in Washington, DC, but the temperature was lovely, and being outside seeing the trees and hearing the birds was lovely. As my walk was coming to an end, I picked up a beautiful purplish colored maple leaf that had fallen. I placed the leaf on the dashboard of my car, and then placed Mattie's plastic lizard on top of the leaf. Mattie loved collecting leaves, and Peter and I each have a pile going dedicated to Mattie. Peter is a bit more creative with his leaf collection, and I must say his display caught my eye when I returned home on Saturday. He has the leaves lined up by our door, by the light fixture. But they seem to be standing upright and greeting visitors who come to our door!
I met Ann today after my walk. Some of you who read the blog daily, may have asked yourselves how do I handle vacations or time away from a friend who has been right by my side from day one to pick up the pieces? The subject matter of attachment is one I have become well versed in since Mattie's death, and with time, I will share with you my thoughts on this and the role of friendships in my life as a survivor of pediatric cancer. Suffice it to say, Ann and I accomplish the mundane together, but if you spend time with us, you realize even the mundane isn't so mundane with us. We naturally feed off of each other, and I think it is very special to be able to have a friend, where just doing the everyday things together is enough. Sure we also like the bells and whistles too, but unfortunately life isn't always filled with them.
Later in the afternoon, I went with Ann to visit Mary (her mom). Mary has moved to a new assisted living facility and is adjusting quite well. Mary wanted to hear about my trip, about my mom, and what it felt like to be home. Excellent question. Being home is CHALLENGING. Not that being away isn't, but being away separates me from the constant reminders all around me. I think as time has passed since Mattie's death, I have come to realize that for us this is as good as it gets! This is our reality, and with time the reality becomes sharper, clearer, and more pronounced. I know that Peter feels the same way, and therefore I have to believe that the death of a child is quite different an experience than a more expected and natural one.
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