Tonight's picture was taken on January of 2004. Mattie was almost two years old. This was quintessential Mattie. Busy, strategizing, and playing with boxes. He could have had all the toys possible, but at the end of the day, he loved a plain box. It was wonderful to see him transform them with his imagination.
Quote of the day: Time is free, but it’s priceless. You can’t own it, but you can use it. You can’t keep it, but you can spend it. Once you’ve lost it you can never get it back. ~ Harvey Mackay
Like yesterday, today flew by. I started my day on a conference call. Last Fall, we went for a training in Dallas on a methodology that helps children with cancer and their families manage stress and improve decision making. As part of that training, we agreed to participate on four follow up conference calls. Today was the call. Keep in mind that I am the only advocate on the call. So for me I get to listen to how clinicians are applying this model at their treatment sites.
I had issues with this model when we went for the training, but today confirmed my feelings. My issue with the model is that it can appear very linear, and unfortunately dealing with people and their issues is anything but linear. In fact, when talking about childhood cancer it is very easy to be falling from peaks or into valleys. One clinician mentioned today how she is having trouble sticking to the model, when such emotional content is being shared with her. The natural tendency is to listen to someone emote, reflect back on what you heard, and to ask more questions. Taking that route though would put you down a rabbit hole, away from the model. I think there are merits to the model, but it requires more flexibility. In addition, I think asking parents to strategize alternative actions and behaviors while in-patient is next to impossible. Living in-patient is highly stressful and produces a sheer lack of sleep. This isn't the best possible time to approach anyone, and I know the clinicians are finding this to be true. Nonetheless, I think what this shows me is that advocate participation is crucial. Living the experience provides vast insights that researchers and clinicians just don't have, and therefore advocates truly improve upon research.
The rest of the day was consumed by the Foundation video I am trying to create. Believe it or not, I am NOT even close to being done with it. The song I chose is too short for the amount of content that needs to be featured. So I am back to the drawing board.
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