Tonight's picture was taken in August 2008. Mattie was in his first few weeks of treatment. We did not know if we were coming or going back then. We were truly shocked over a cancer diagnosis. Mattie hadn't lost his hair yet, as he only started chemo. Mattie's art therapists learned early on that Mattie loved art and creating. Not to mention Scooby Doo. So they sketched out the Scooby Doo gang on a ceiling tile and invited us to paint it as a family. This tile meant a lot to us, and for many years it hung on the ceiling of the clinic at Georgetown. This was the first of five ceiling tiles that Mattie created. But that tile is meaningful to me, because as a family we were lost and traumatized and painting together gave us time away from the reality of cancer.
Quote of the day: Life is not profound without its own tragedy. It humbles us. Sets the bar for our introspection. Keeps us from believing we are gods. Puts our egos in check. ~ Crystal Evans
I received an evite out of the blue today from Georgetown University Hospital. Typically when one receives an evite (an electronic invitation) it is to a party or celebration. Well in this case it was neither! Instead, through this group wide invitation, I learned that the children's ceiling tiles that were painted in the clinic were coming down and we could pick them up at certain dates and times, or they were going to get thrown out. The reason the tiles are coming down is because the clinic is getting renovated.
Perhaps when you read the paragraph above you already see two problems with what I am saying, or maybe you don't. As you know, I am going to tell you my thoughts anyway!!! Just when I think I have experienced about everything possible as it relates to Mattie's loss, I find that I can hit a whole NEW low.
I do not think information about our children's tiles coming down should be conveyed in an electronic invitation. There is nothing happy about the tiles coming down in my mind, especially if you are a parent of a child who died. So my first issue was with how this information was conveyed. My second issue, which is probably the most upsetting is the significance of the tiles coming down. Sure I could take the tiles home and preserve them, but in reality these tiles have been up and on DISPLAY for seven years now. It made me feel that Mattie's spirit was still alive and his life was being celebrated in a symbolic way, because his art was providing colorful hope to all the children beneath the tiles who were seeking treatment. With the removal of the tiles, this signifies YET another loss in our lives and ONE MORE place that won't be remembering Mattie. Tangible items mean a lot to bereaved parents and it would have been my hope that even if the tiles can't be salvaged and used in the new clinic that a creative alternative could be presented to parents. Whether that is a photo of the tiles that could get incorporated in the new clinic, or something!
Needless to say, I can't tell you how upsetting this was to me today, and how even more upsetting it was that I had to try to explain my position to the hospital. I am frustrated, angry, and sad all at the same time. Naturally I have photo documentation of EACH tile Mattie created and I am sharing it with you tonight.
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