Tonight's picture was taken in February of 2009. This was quintessential Mattie! Mattie was in his PICU room building with popsicle sticks and a glue gun. That was really all Mattie needed was building material and markers and his imagination could do the rest. Of course in between building I was tempting him to eat goldfish crackers. But cancer and eating did not go hand in hand for Mattie. Mattie was long and thin to begin with but on chemotherapy, Mattie was almost skeletal like. However, once Mattie developed Osteosarcoma, I began to notice that many of the children who shared this disease with him had a similar frame.... all tall, lanky, and lean.
Quote of the day: We conquer by continuing. ~ George Matheson
It was my first full day back in DC and what a day it was! Though I had many chores to do like laundry and grocery shopping, I also had many Foundation items on my plate. However, despite how I planned for the day to go, it didn't exactly go that way. Several things came to my attention, which I can't quite discuss in such a public format. Needless to say they ranged from upsetting to perplexing.
When Mattie was diagnosed with cancer, our world stood still. It practically stopped in many ways. Life as we knew it ceased to exist and the ironic part is, it has never picked back up from where we left off. It is permanently altered. However, in the process of becoming altered we met many wonderful nurses, doctors, and psychosocial support staff along the way. As Peter and I always said, these individuals at Georgetown Hospital became like our family. The beauty of family is they help us keep memories alive, and certainly when a child dies, we cling to these memories and crave others to help us remember. Yet what happens when one by one each person we were close to at Georgetown leaves? Our family gets smaller, so small that it too seems non-existent. As each person we were close to leaves Georgetown, they take a part of Mattie's memory away. It will no longer be housed at the hospital. What has made Georgetown special to us was the people, the people who knew Mattie. Yet as time moves on, people relocate, change jobs, or move on for other reasons. That is the natural progression in life, but it is unnatural for us. But besides being unnatural, it is upsetting because the fear is Mattie will be forgotten and his memory within the hospital will fade. Why is that a big deal? Well it is a big deal because in my mind the Hospital was the one place on this earth that knew our son quite well and experienced him 24 hours a day, 7 days a week. We clung to that institutional memory and it is hard to grasp that this memory is almost all gone now. Gone just like Mattie.
Mattie may have been treated at Georgetown, but I feel no ties to the physical structure itself. Other than parts of the Hospital bring back bad memories and they remind me of what is missing from my life. As each of our hospital family members leave, it is as if we are mourning another loss. I am sure that may sound odd or intriguing, but nonetheless it is our reality. Having a child diagnosed with cancer sets off a cascade of losses, and certainly losing a child to cancer is like a guaranteed lifetime of loss. So today I am saddened that I have to say goodbye to another important member of our hospital family. One I deemed crucial. But this loss sets off a chain reaction, regarding the Foundation's activities and what we want to fund.
I would have to say that running Mattie's Foundation produces great highs and lows. There are really no in between moods. Which can be problematic because what makes this work very challenging is the emotionally taxing nature of the work. Today was one of those low and emotionally challenging days. A day which is hard to spin out of really, because when you are low it clouds everything else you see and how you see it. I shared today's low with only a couple of people, and I have very much appreciated their feedback and support today. Like anyone who is upset about something, I am not looking for a solution, just looking to be heard and to know I'm understood.
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