Tuesday, December 7, 2010

Tuesday, December 7, 2010 -- Mattie died 65 weeks ago today.

Tonight's picture was taken around Christmas time in 2006. We were visiting Peter's parents in Boston, and Peter took Mattie for a walk in the woods behind their house. Mattie spotted a lovely ground cover of moss, and decided, despite the cold temperature, to stop and lie down on this natural cushion. He made himself right at home and enjoyed feeling the sensation of the cold ground cover beneath him. Peter captured that moment in time on their walk together, and though I wasn't there with them, when I saw this photo I could feel the happiness Mattie must have felt by having the freedom to roll around and by outside.


Quote of the day: The conventional explanation, that God sends us the burden because He know that we are strong enough to handle it, has it all wrong. Fate, not God, sends us the anguish. When we try to deal with it, we find out that we are not strong. We are weak; we get tired, we get angry, overwhelmed. We begin to wonder how we will ever make it through all the years. But when we reach the limits of our strength and courage, something unexpected happens. We find reinforcement coming from a source outside of ourselves. And in the knowledge that we are not alone, that God is on our side, we manage to go on. ~ Harold Kushner

As I look at tonight's picture of Mattie, I can't help but reflect upon his bright red jacket, his reindeer hat and matching scarf. You may not be able to see the scarf in this picture, but this hat and scarf combination was something that I picked out for Mattie specifically to match his coat during the holiday season. Mattie LOVED the color red, and in many ways it fit his personality. This morning, as I was trying to help Peter locate his earmuffs in the closet, what literally jumped out at me from our bin of hats, gloves, and scarves, was this reindeer scarf in tonight's picture. In fact just seeing the scarf brought back all sorts of feelings for me. I am surrounded by Mattie's things. They are all around me. But this scarf, something I do NOT see every day, flooded my mind with memories. Mattie wore that scarf for example when he and I built an igloo outside our deck. I remember that day, it was frigid out, and we were outside for hours. Mattie handled that adventure well, and I landed up with the flu. There are many vivid memories of Mattie wearing that scarf, and it is hard to believe that the scarf is still with us and in perfect shape, and yet Mattie is gone.

Today marks the 65th week Mattie has been gone from our lives. Peter and I learned over the course of the past two and half years that cancer is a horrible and life altering disease, and we are quite adamant in our feelings that no child or family member should have to experience what we lived through. I have been writing about my feelings and our story since July of 2008, and yet today, I was simply floored by what came out of the mouth of an eleven year old. Which only confirms that we have a lot of work to do, and cancer awareness and education should not be targeted only to adults but children too.

I had the opportunity to pick Michael (Ann's son) and his friend up at school today. Michael's friend made some astute observations about the interior of my car. She noticed I had a Highlight's Magazine in the back, I had spray painted rocks and pennies in a compartment in the backseat, and I had a plastic lizard sitting on my dashboard. I told her that all those things belonged to my son, and I left it at that. However, I suspect she knew Mattie had died based on the way she and Michael were conversing. Michael's friend went on to tell us a story about a girl she knew who developed cancer. She said that the girl is fine now, and after her treatment for leukemia was over, the girl was able to have her wish granted through the Make-A-Wish Foundation. For those of you unfamiliar with this fine organization, it is the nation’s largest wish-granting organization. Since 1980, the Foundation has given hope, strength and joy to children with life-threatening medical conditions. From our humble beginnings with one boy’s wish to be a police officer, the Foundation evolved into an organization that grants a child’s wish in the U.S. every 40 minutes. The girl in this story wished to go to the Country Music Awards, and her wish was granted.

Now here is what shocked me. Michael's friend went on to tell me that her friend was very lucky to go to such an awards show, and she wished she had cancer so she could get a wish granted. As soon as she said that, both Michael and I told her that there is no way she would want cancer and that she shouldn't even joke about wishing such a thing. I have been thinking about her comment ALL afternoon and into the evening. I am not sure what bothers me more, the fact that she perceives attending an awards show and getting a "wish" granted as more significant and important than her health, or that she perceives a cancer diagnosis as a mundane physical illness, like getting a cold or the flu. Honestly which ever way I look at this, the conclusion I come to isn't positive. Keep in mind that this young girl is a bright and inquisitive person, and most likely is voicing her opinion, an opinion which I am sure may be shared by other young people. Over the past two and a half years, I have observed and heard from many parents about the impact of Mattie's death on their children. Though this isn't the majority of families I have interacted with, there is a percentage of parents who feel it is important to shelter their children from cancer and all its unpleasantness. I naturally respect whatever decisions parents come to, but I do have to say that children are a lot more resilient than we give them credit for. Explaining cancer at a developmentally appropriate level to children, I feel is crucial. When children can't talk about things they hear about with the adults in their lives, then they are left to their own devices. Such devices can produce one of two reactions, complete fear, or worse complete ignorance. Ignorance into thinking that cancer is worth having because of the attention and special gifts you can get. The whole notion of this today bothered me, and all I could picture as she was wishing herself cancer, was this girl's life being transformed by osteosarcoma. An image that I can freely see, and one she has NO idea about. Chances are if she knew what I did she would see that her health was better than any wish the Make-A-Wish Foundation could grant!
 
Later today, I got to share a family story with Michael. One of his school assignments is to create a book of family memories. Or in essence to collect oral histories from four generations of family members. Though I am not related to Michael, Ann asked if I would share a story about one of my grandparents with Michael (my story would constitute a memory from the fourth generation). The assignment is a very clever one, because it teaches children on to listen, ask questions, and absorb information orally, and then capture it in writing. I like the premise of this assignment, because it not only teaches skills, but it has you connect with four generations of family members, and it records snapshots of family history. Something a child might not appreciate now, but in years to come, this will be an important gift.
 

There are many stories I could have shared from either my paternal or maternal grandmothers, since I spent a great deal of time with both. However, I chose a story that relates to this Cameo pin you see pictured here. This cameo pin belonged to my paternal grandmother, and I remember before my uncle died, he gave me this piece of jewelry. My grandmother had eluded to her challenging introduction to the United States, but my uncle filled in many of the unexplained pieces and when I received the cameo, all I could think of at the time was I was holding and now possessed a very important part of my family history. I never wear this pin, and I haven't looked at it in years. But I store it in the same place, and when I needed to give Michael a picture that captures the essence of my story, I immediately went to find the pin today. My grandmother grew up in a small town in Southern Italy called Cassano. By American standards this town may seem backward. When I visited it in the 1980s, the town did not have running water or electricity 24 hours a day, and all the streets were cobble stoned, with very little vehicular traffic. When my grandmother was a young girl, her parents decided to send her to America to "visit" her brothers (who had already immigrated to New York). My grandmother thought she was going away for a journey but would return home after her visit was complete. Before she departed Italy, her mother gave her the cameo you see here. A cameo that would have great significance. For you see, my grandmother never went home again and she never saw her parents again. My great grandparents in essence said good-bye to their daughter (without her knowledge) in hopes that she would have a better life in the United States. My great grandmother purposefully gave my grandmother this cameo with a brilliant stone resting on the lady's heart as a reminder of their love and connection. The stone was to signify that my grandmother was always a bright light in her mother's life, and in a way the shinning stone represented the heart of my great grandmother and her love for my grandmother. I find this to be a valuable and very touching memory, and I guess I can relate to this story, because I now know how hard it is to say good-bye to your child. I have to assume my great grandparents loved my grandmother so much that they were willing to separate from her, so that she could have a chance for a different way of life. I can't fathom such a decision, but I do know that this pin has been passed down four generations (from my great grandmother, to my grandmother, to my uncle, and to me!). 
 
I would like to end tonight's posting with a message from Mattie's oncologist and my friend Kristen. Kristen wrote, "With the holiday rush in full swing and me wishing that Christmas was in March this year...thank you for helping me to reflect on what is truly important in the Holiday season and every day. Thinking of you this Tuesday and every day."