Tuesday, February 26, 2013

 

Tuesday, February 26, 2013 -- Mattie died 181 weeks ago today.

Tonight's picture was taken in September of 2008. At that point, Mattie was a month into treatment. Clearly most of his hair had fallen out yet it was before any of his surgeries. Despite how horrible chemotherapy was, surgeries for Mattie were much worse. They were worse because in the process of trying to save Mattie's life he lost the ability to do all the things he loved to do. Which was to be independent. To walk, run, feed himself, go to the bathroom on his own, and to look like all the other kids. I posted this photo tonight of my mom, myself, and Mattie with Jenny. I had the wonderful opportunity to connect with Jenny today. Jenny was one of Mattie's art therapists and she was not only extremely competent and a great therapist but she is a wonderfully compassionate and insightful individual. Jenny moved to Colorado shortly after Mattie died and she was in town for just today. Despite the fact that we never actually saw each other physically, we had a wonderful time reconnecting! Jenny is one of the people I most definitely miss seeing on a regular basis. In fact, it was through Jenny that I met Linda (Mattie's childlife specialist). Both of these women kept me sane on some very challenging days.


Quote of the day: We are like butterflies who flutter for a day and think it is forever. ~ Carl Sagan


This afternoon, I sent Jenny (Mattie's art therapist) an email because I had a request from a student, who wanted to interview an art therapist. The first art therapist who came to my mind was Jenny. Jenny has left a lasting impression on me. While I was emailing Jenny, she was emailing and thinking of me at the same time. What are the chances of this?! I don't know, but I call it fate! We had a good old time chatting today, sharing reflections, and understanding the ramifications of having and caring for a child with cancer, and of course witnessing a child die.  

As the Walk for the Foundation approaches my stress level heightens tremendously. It is very difficult knowing that I have to raise a certain level of money for the Foundation in order to keep our work going. Keep in mind I am NOT a professional fundraiser, I am not in the field of business, and the list can go on about what I am not. I am a counselor by training and honestly the skills the Foundation sometimes requires goes beyond my capabilities. But like any good mom, I push myself and try to rise to the occasion. After all, the Foundation is my baby. Yet as Peter will attest, I have a short fuse in the spring, and not because this is my intention, but it my overall level of stress that I am trying to manage.

Later in the day, I also had our first post-think tank conference call. Pulling together 25 professionals at the California conference was excellent, but now the hard work begins. Each of us on the call was assigned an essential element to be incorporated into the standard of care. Yet each of these elements needs to be researched which means that a comprehensive literature review of articles has to be conducted. So I find myself feeling like I am right back in graduate school, and for those of you who knew my dissertation chair, you have to know that doing a literature review for her was NO easy feat. She strove for perfection within herself and demanded no less from her students. So much so, that it took me years to do my literature review. YEARS! She didn't value simple electronic searches, she wanted you to also do it the old fashioned way which meant going into the library and doing manual searches through the stacks. So I have been conditioned on the proper way to conduct a literature review and I have to say that the notion of such a review now on top of planning the Walk sounds sickening and daunting. The review is due within one month's time, so I need to factor this into my schedule!

 

Meanwhile in the midst of my day, I have had Patches looping around me. She wouldn't eat anything I gave her. Not even a bite. She was getting agitated because she was hungry, but nothing would go down. Until this evening! When I served dinner, she seemed intrigued by my cutlets. So she hopped up on our table. Typically in her well days she knew better than to jump on the table. I did not tolerate this! But now that she is dying, I am very lax. She joined us and I gave her cut up chicken. She ate more chicken than Peter tonight. Peter snapped a picture of Patches eating with us, we are a threesome at dinner these days. Mattie would have gotten a kick out of this! However, I did not want Peter to capture Patches' face on the camera, since I would prefer people to remember her beautiful face before her eye was attacked by cancer.