Tonight's picture was taken in May of 2009. This was at the Mattie March held in Mattie's honor at his school. Clearly who ever took this photo was fascinated by Mattie's love of caterpillars. On the day of the event, Mattie used a cup to collect caterpillars from the bushes around the School's track. Notice that Mattie was holding one. But this was only one of many he collected that day and that came home with us!
Quote of the day: Life engenders life. Energy creates energy. It is by spending oneself that one becomes rich. ~ Sarah Bernhardt
The plans for the 8th annual Mattie Miracle Walk & Festival are well under way. This is always a stressful time of year because I not only have to plan the event but I have to raise money. Either one of these things alone is challenging but together, watch out! Our goal this year is to raise $80,000. We have raised around $40,000 so far, making us 50% of the way there! But now I worry about the remaining 50%! Last year the walk generated $85,000, and I took this into account when deciding this year's goal.
I am happy to report that we have 14 walk teams signed up so far. Two of which feature a childhood cancer survivor and a third team which was created in memory of a mom (with four children) who lost her battle to kidney cancer. We are very honored to have these three teams with us this year because typically Mattie Miracle raises money from people in the community unaffected by childhood cancer or cancer in general. It means a lot to me that these three groups touched by this disease wish to support our psychosocial mission. If you haven't done so, please check out our Walk website: www.mmcfwalk.com.
The beauty of our event is you can support us in person or even join a team virtually and help us raise money. So walk, join a team, purchase raffle tickets, or contribute to our event.... lots of ways to support this event even if you can't attend. All walk proceeds go to support our psychosocial programs for children with cancer and their families.
Later this afternoon, I had to get an MRI of my back. The technician asked me if I needed to hear music and so forth. When I asked her how long I would be in the tube, she said 20 minutes. So I passed on the music. I have taken so many MRI's of the brain, and been through countless ones with Mattie, that I literally can tune out the noise. I reflect on all that Mattie had to endure in an MRI tube, and that gives me pause. It is uncomfortable enough for an adult, but how they expect children who already have issues and are in pain to withstand such a scan for over an hour at a time is unreasonable. Bordering on inhumane, especially if you have an inpatient tech who is inexperienced working with children. We had many of them at Georgetown. One tech truly did not like Mattie and he told his colleague, Jey (who was very fond of Mattie), as much. Jey told this tech he had NO IDEA about Mattie, Mattie's personality, how his life was transformed by cancer and what Mattie endured. In the end, it turned out that this tech had a change of heart about Mattie, but it wasn't a pleasant story to hear about.
There were many times living in the hospital that I wanted to throttle people! I was never physically combative (though I can appreciate why someone could be), but when I got upset, people knew it! Typically if I did not get a response out of the person I had a disagreement with, I went above their head. Up the food chain, and I learned quickly when in doubt, call your patient advocate. I have no idea why medical staff are so intimidated by these people, but they are.
I remember one day, a friend of mine (living in the outside world as I called it), came to visit me in the hospital. She saw me have it out with a medical resident about Mattie's inadequate pain control. My friend took me aside and questioned why I had to be so aggressive and why I was getting so upset. That it wasn't good for me. I tried to explain this to her, but I gave up. I gave up because I was living in a system she was unfamiliar with. In a hospital setting the MORE noise you make, the more attention and care you get. I hate to say it, but it is the fact of the matter. It is no place to be timid, patient, and the like. After my friend's visit that day, I wasn't sure what infuriated me more. That Mattie was in pain and I was working in a system that didn't get that, or that my friend was challenging my behavior and viewed me as inappropriate. Needless to say, I knew what I had to do, and I didn't change my style. Funny how it is 8 years after this incident, and I still remember it vividly.
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