Tonight's picture was taken in September of 2003. Mattie was a year and a half old and was walking up a storm and exploring everything. He loved our wrought iron piece in the living room. He played around it, put his toys on it, and did everything but climb it! Ironically, we use this metal piece now to display many of Mattie's creations.... from legos to pottery.
Quote of the day: If I am to meet with a disappointment, the sooner I know it, the more of life I shall have to wear it off. ~ Thomas Jefferson
I went to the hospital today to push the Mattie Miracle Snack Cart around the pediatric units. I try to do this once a month at the hospital where Mattie was treated and once a quarter at Children's Hospital at Sinai in Baltimore. I know that many parents who have lost a child to cancer do not want to return to the hospital ever. I can appreciate this feeling since this space holds profound and long lasting pain and memories.
However, for me returning to the hospital was always like coming back to a second home. Peter and I spent so many days, nights, and months there, that we practically knew everyone who worked at the hospital. But now that we are 9 years passed Mattie's death, I see the hospital in a new way. As is typical with time, the people we once knew are no longer at the hospital. So now interacting with nurses, doctors, and psychosocial providers in the units, I realize they have NO idea who I am, and they certainly do not know Mattie.
In a way, Mattie's memory has been forgotten. It boggles my mind especially since this was our medical home for 14 months, it was the place where so many medical traumas unfolded, and the place where we had to leave Mattie behind (in the hospital's morgue) on the day he died. For us, every aspect of those 14 months remains with us, but unfortunately hospital walls do not talk nor do they have memories. It is the people within them that help parents carry on the legacy of our children. What happens though when most of those people are gone?
I will tell you! What happens is what struck me today. I left the hospital after pushing the cart very saddened, depressed, and also angry. Not a good combination for me. All I could think about was this was Mattie's first room he had chemo in, or this was the room Mattie recovered in after his first limb salvaging surgery, or worse, there was the room Mattie died. Yet for the most part, I am NOW the only one around in these units who remembers this. To those around me, I look like your average person without a care in the world. They have no idea!
The feeling that I am left with today is sheer disappointment and like Jefferson said in tonight's quote, I now have the rest of my life to wear it off. So well stated, because there are some feelings one doesn't ever get over.
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