Tonight's picture was taken in September of 2008. We took Mattie to New York City to consult with oncologists and surgeons there! It was not a positive healthcare experience to say the least. In between appointments, we wanted to lighten Mattie's mood so we went touring around with him, stopping at the famous FAO Schwarz.
Quote of the day: There’s no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower
It's been a day already and it isn't even 3pm. I dragged myself out of bed today in order to get the process going. There is no sleeping in, because if I do, there would be no breakfast and forget about my dad getting up, showered, and dressed. It is a heavy burden that weighs on me daily. On top of this existence of course, was the anniversary of Mattie's death this week. My parents are no longer intact enough to have serious or meaningful conversations with and frankly given the nature of their cognitive decline they have turned inward. The world revolves around them, their needs, and believe me their needs take up an entire day. Yet the passing of Mattie is something that Peter and I walk with daily and not having the time, space, and ability to process our thoughts and feelings, we get frustrated.
I woke up in a terrible mood today. The flu shot from yesterday slowed me down, and then everything seemed to go wrong today. When I went to make my parent's bed, my mom had put a china plate in a bag that was sitting on her bedroom chair (not a good place to put a plate by the way). As I went to reach for her dirty laundry, the bag fell on the floor, and the plate broke in thousand pieces. While dealing with that mess, my dad was up in the bathroom and walking around without clothes on. When I finally got the broken china picked up, I got my dad in the shower. He only proceeded to flood the bathroom floor. So I got towels out to deal with that. Get the picture? Today was also linen day, in which I change their entire bed. I try to do this every two weeks. My dad literally have 15 pillows, so pillows alone practically fill a washing machine.
After serving my parents breakfast and cleaning it up, I did brain games with my dad and got him to do part of his walking routine. But he was very focused on the bathroom today. Unless he has a bowel movement, he can make all of us miserable. My life is programed around the bathroom and food. Taxing is all I can say. Once my dad was in his recliner, I took my mom to the farmer's market. Something that should be fun is a chore. I have gotten to know some of the farmers and they like talking to me. Which means that my mom has to stand in one place, something that she has a harder time doing these days. So while talking, she gets irritated and makes me neurotic. Needless to say the drive home was miserable and she complained of pain, which meant that as soon as I walked in the door of the house, I had to get her Advil and massage her neck. I am running a nursing home in every sense of the word.
What gets me upset and frustrated however is the fact that I know work for the Foundation is piling up all around me and it is hard for me to find the time and ability to focus to get it done. In fact, this month we have a psychosocial campaign going with the American Psychological Association. They have helped us promote each of the 15 Psychosocial Standards of Care, Standards which were our vision in 2012. These historic evidence-based Standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care.
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