Tonight's picture was taken in August of 2006. Mattie was four years old and he loved his orange tunnel. So much so that he was wearing it around our home. Even up the staircase. What I also noticed from this picture were Mattie's shoes. Mattie liked to have his shoes lined up on the staircase. It looked a bit like a shoe store at times, with each step featuring a different pair. Our staircase now looks quite barren in comparison, but I recall it took me over a year to remove any of Mattie's shoes off the staircase after he died.
Quote of the day: To be human is to be aware of the passage of time; no concept lies closer to the core of our consciousness. ~ Dan Falk
When my friend Charlie sent me today's quote, my immediate reaction to it was NO! I am certainly very human but since Mattie's death I no longer am aware or care about the passage of time. Before Mattie's death, I would have to admit that we lived in a very time sensitive household. If you doubt this statement, you just need to look at our first floor. We have quite a clock collection.... ALL sorts of clocks: cuckoo, mantle, banjo, and digital! At one time, all these clocks used to be running, and would make noises on the half hour and hour! Now all our clocks are stopped, except for the cuckoo clock. I received the cuckoo clock from one of my mentors in graduate school. Unfortunately months after he retired, he died of a sudden heart attack. But I keep the clock running in his memory. Certainly I am sensitive to Foundation deadlines, and Peter goes to work each day, but the passing of time doesn't have the same connotation, and I imagine that is because without Mattie's presence each day is one and the same.
If July is marked and clouded by the day Mattie was diagnosed (July 23), August has its own problems as well. On August 5, 2009, only SIX WEEKS off of chemotherapy, we learned that Mattie's cancer had spread throughout his body. In fact, I do not think doctors thought this was at all possible, but I knew something wasn't right because Mattie wasn't eating and had NO interest in food or water. Mattie was bright and strong willed, but never manipulative, and I knew if he couldn't and didn't want to eat, there was a reason. I will never forget how I learned about Mattie's terminal status. I took Mattie to the hospital that day for a sonogram to rule out what his issue could be. I knew immediately that the tech performing the sonogram saw something. I knew because he turned to me and Linda (Mattie's child life specialist) and asked us what Mattie originally came to the hospital for in 2008. I soon learned that day that Mattie needed a CT scan and within about two hours, one of Mattie's doctors called me to let me know the news. The news I already sensed from watching the sonogram tech. After I learned Mattie's case was terminal, within minutes I had to pull it together to take him to a physical therapy appointment with Anna. I managed to be composed to get him to the appointment, but then I told Anna that I needed air. She got it immediately. We worked together long enough for her to sense when something wasn't right, because under no circumstances did I ever leave a physical therapy session. I was always right in the mix doing the activities with Mattie and Anna.
I also recall between the sonogram and the CT scan, Mattie and I sat outside in the hospital rose garden. That garden was a haven for me, away from the smells and chaos of living in a PICU. That day, I believe Mattie and I braced for the worst, and he sensed that was coming. Which was why he wanted to get out of his wheelchair, sit on my lap, and hear the story about the day he was born. He sat in my lap, almost like a baby would sit in its mother's arms. Also keep in mind by that point Mattie was very fragile and basically skin and bones. Mattie loved hearing the story about his birth date, and particularly loved the way I recounted it. As August 5th, has come and gone, it maybe another day on the calendar for others, but for us, it was the day our world fell apart yet again.