Tonight's picture was taken in October of 2006. We took Mattie to one of our favorite fall festivals in the area. As you can see Mattie loved the whole experience with a wheel barrel and walking through the patches to find just the right pumpkin. Or I should say PUMPKINS. Mattie loved everything pumpkin, even eating pumpkin. Since Mattie died, I have yet to buy a pumpkin for the fall season. Somehow it just isn't the same nor does it have the same significance to us.
Quote of the day: It was the word 'late' that did it. Such a stupid word to use of the dead, implying that they would be with us today if they hadn't happened to be delayed in traffic somewhere... ~ Emma Donoghue
It was one of those cold, grey, and rainy days in DC. The kind I truly find depressing. To me nothing is greater than DC in the summer time. It seems like during that season we are always promised hot and humid weather. Of course, I am in the minority, but it could be this way year round and I would be thrilled. But just like DC can have its warm and humid season, it also is well versed in GREYNESS and gloom. I never cared for this kind of weather, but it is much worse now that Mattie is gone. It just seems super depressing and doesn't inspire you to want to get outside and interact with the world.
The work that I do on a daily basis gives me great flexibility in the sense that I do not have to report to anyone and things are on my own time schedule. I realize that could wreck havoc in some people's lives because perhaps nothing would get done. But unfortunately I am a very disciplined person and running a Foundation is not always the best match and me, since I could literally work 24 hours a day, and during some of our busy moments, I practically do. Which then usually leads me to getting sick. I did not have cancer, Mattie did, and yet from his battle I find that my immunity has been affected. Now under times of pressure and stress for prolonged periods, it is almost a given that I am going to get ill.
I spent the day at home working on all sorts of Foundation items and tried to remain still in order to recover. It is hard to believe that tomorrow afternoon Peter and I will be virtually transported to Dallas, TX. We will be addressing a group of psycho-oncologists at the Children's Oncology Group conference and walking them through Mattie Miracle's vision for a psychosocial standard of care. We will also update them on just how far we have come since March of 2012. In our November Foundation newsletter, I will be highlighting our national accomplishments and where we are at with the standard. Needless to say, it all started with my curiosity about psychological research as it related to childhood cancer. So back in 2010, I did a search on childhood cancer and trauma. From my searches a name kept popping up, Dr. Anne Kazak. So one day on a lark, I decided to email her and tell her how much I appreciated her research and wanted to know if she would be willing to talk with me about our Foundation. Anne responded right back and she has been a crucial member of our team ever since. Anne connected us to another psychologist, who connected us to another and another. So now we are working with a core team of five, with about 40 psycho-oncologists from all over the country focused on developing a standard of care. Talk about a grass root effort, but sometimes that is the only way to get true change accomplished.
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