Tonight's picture was taken in October of 2008. Mattie was in the hospital recovering from his first limb salvaging surgery. As you can see Mattie was all covered up, his right arm was immobilized, and we had his IV pole in toe. Notice the origami praying cranes hanging from Mattie's IV pole. This was the first beautiful set of cranes that were made and given to us by my friend Junko and her mom, Kazuko. The cranes became a part of us, and were with us on each hospital admission. They were made with love and prayers, and in many ways they were colorful reminders of love, friendship, and the power of positive thinking. In tonight's picture you see that Mattie was surrounded by three beautiful women. He had good taste. Going clockwise starting at the 9 o'clock position, you see Whitney (one of Mattie's favorite childlife interns), Lesley (another one of Mattie's favorite childlife interns), and Jenny (one of Mattie's amazing art therapists, who I became quite attached to). On that day, these ladies inspired Mattie to leave his PICU room and venture into the childlife playroom to blow bubbles. It looks like a fun activity, and it was, but our underlying goal was to get Mattie to take deep breaths since without such exercise after surgery, the lungs could have collapsed which would have caused additional complications. As you can see Mattie started out with small bubble makers, but I assure you, by the time he was finished, a gigantic bubble maker was added to the mix, and it literally looked like the room was filled with bubbles and not people. Bubbles were everywhere and all over the floor. It was an interesting clean up issue, but in usual fashion, Whitney, Lesley, and Jenny did not skip a beat, and they certainly weren't going to stop an activity just because it was messy. If something worked for Mattie, they went with it. He had that kind of spirit about him, and when people sensed he was low or down, all the stops came out to try to change his mood. These are things I will never forget. These are also women who I not only admire but am grateful for their love and commitment to Mattie and my family. They made the endless moments in the Hospital bearable.
Quote of the day: There is only one way for you to live without grief in your lifetime; that is to exist without love. Your grief represents your humanness, just as your love does. ~ Carol Staudacher
I received a funny email today from my dad. He was joking with me about the terminology "instrument." As many of my readers know, I have been writing about a psychosocial instrument on the blog for the past couple of a days. I plan on discussing this instrument next week at the Hospital, and therefore I have been trying to learn as much about it as possible. My dad asked me in jest if this instrument was similar to a saxophone!!!! Naturally when we think instruments, one of the things that come to mind are musical instruments, not necessarily questionnaires (which is what I mean when I say instrument). My dad's email was worded just so, that I literally burst out into laughter. Perhaps I haven't made myself clear though to my readers. When I say I have combed the research literature looking for an instrument to assess psychosocial risk factors in families with children who have cancer, I am not looking for a drum, a guitar, a piano, or even a saxophone. I am looking for a standardized tool to measure a particular trait or construct.
The beauty of a standardized psychological instrument is that it is administered and scored in a consistent, or "standard," manner. Standardized instruments are designed in such a way that the questions, conditions for administering, scoring procedures, and interpretations are consistent and predetermined. Also the score one gets on such an instrument is interpreted by reference to the scores of a norm group. A group who has taken the instrument and considered to be representative of the population for which the instrument was designed. Lastly, a standardized instrument has known and accepted levels of reliability (meaning the instrument gives consistent results) and validity (meaning the instrument measures the concept it reports to measure). I realize this is MORE than you probably wanted to know, but I wanted to make sure you did not think I am carting in a tuba to Georgetown University Hospital next Tuesday!
Last night I received an e-mail from Ann, asking whether I wanted to get together in the morning to walk. So this morning I got up earlier than I typically would and met her. Ann walks much faster than I do, but I am slowly working up to being able to walk at her pace. We walked and talked for an hour, and covered about 3 miles together. While walking a flock of Canadian Geese flew over head. I simply love these birds, and though I really despise the cooler weather, they are the only signs of fall and winter that I really appreciate. I admire their loyalty to one another, and I admire their team work. After we finished walking, we had the pleasure of seeing Joan Holden, Mattie's head of school, walking to school. Joan was wearing pink, one of my favorite colors, but the color also caught my attention since October 1, is the first day of breast cancer awareness month. As so many of us know, pink is the symbol for breast cancer.
This afternoon, I went to the salon to get my hair cut. I have been going to the same stylist for years, and I have followed her to several different salons, until she and her husband opened up their own salon in Washington, DC. Celina met me when Mattie was a baby, and has followed his development throughout the years. When Mattie died, I think this really shocked her and her husband. I could tell she was concerned about me today because she hasn't seen me for months. As I reconnected with her today, I told her about the Foundation and my idea to pamper moms caring for their children with cancer this holiday season. I will be brainstorming with Linda (Mattie's childlife specialist) and our other Georgetown contacts about my idea. But ideally I would love for moms to be able to get massages and manicures. Celina has agreed to help me coordinate this, and I certainly appreciate her offer since I know she and her staff would do an excellent job. I literally spent three hours in the salon. Mind you I did not get that much done, but they wanted me to relax and not feel rushed, which I thoroughly appreciated.
I then met up with Peter for lunch. We actually ate outside, and the restaurant he took me to, made me feel for just a moment (fleeting of course) that I was sitting at a cafe in Italy. It was a lovely feeling, and the sun was out in its glory. After all the rain we have been receiving in the past two days, it was really welcomed. Over lunch we talked about Wednesday's Foundation board meeting, and talked about some of the activities that have been percolating in my head. Peter and I are coming together with a like minded vision for the Foundation, and it is a wonderful feeling to be on the same page. So overall in the grand scheme of our daily existence without Mattie, today was a more positive day, and I am trying to hold onto that feeling.
1 comment:
LOL, thanks for clarifying "instrument" Vicki - must admit I had been picturing some kind of physical instrument similiar to a heart rate monitor, or box with wires! Especially since you made some mention of it close to a mention of technology at one point!! Cognitive dissonance all how cleared up ;-)
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