Tonight's picture was taken in June of 2009 in the physical therapy gym at the Hospital. Pictured with Mattie were Anna (Mattie's physical therapist) and Brandon (Mattie's big buddy at the Hospital). What I love about this picture was Mattie was sandwiched between friends. Brandon was holding out his hand to encourage and support Mattie! Brandon came into clinic to motivate Mattie several times in his course of therapy. This was SO helpful because Mattie would occasionally go through slumps, in which he would become upset, experience pain, and really did not want to take those scary steps to learn to walk again. Mattie had been through so much, and frankly I couldn't blame him. In all reality what he was able to accomplish was amazing. I would like to see adults have surgery to remove bones in their two arms and a leg, and see how well they would be feeling afterward.
Quote of the day: I have grown to believe that even as these losses have broken me, so can they heal me..... When someone I love dies, I buy a candle. There are twelve across my mantle now: one for my father, one for my mother, one for my daughter, two for my grandfathers, and seven for my babies who were born too soon. It is a simple, comforting act to light them in reverent remembrance of each life. Whenever anyone stops to count these candles, the question I am most frequently asked is, "How did you do it?" How did you survive?" My usual answer: "I don't know." ~ Dana Gensler
It was an overcast and rainy day today in Washington, DC. Not my favorite weather, and unfortunately for me, I am one of these people who is deeply affected by the weather. Seeing and feeling the sun, makes a difference in my outlook. I decided in the morning that I did not feel like going out today, however, as the morning wore on, I asked Peter if he had time to meet up for lunch. So for an hour, we met and chatted. We talked about Foundation items, and in our conversation I realized there were several tasks that I really wanted to take on today so that we would have the possibility of accomplishing some of the concrete goals I have in mind for this Fall. Getting out and talking about these items today, enabled me to come back home, and address each one.
The first connection I made today was with a researcher and psychologist at Children's Hospital of Philadelphia (CHOP). I have been reading her articles about a research instrument she created and is now being used at CHOP in their pediatric oncology clinic. At CHOP, each family is given this instrument, to assess the degree of psychosocial risk a family is in at the time of diagnosis. The instrument is intriguing because it also has good predictive validity, meaning that risk factors presented at the time of diagnosis tend to be good predictors of ongoing distress throughout the treatment phase. In any case, this screening tool caught my attention, and what should be noted is there is VERY LITTLE empirically based psychological assessment tools available to the pediatric oncology field. I look forward to connecting with this researcher, learning more about her instrument, and seeing how such an instrument can be brought to the Georgetown University Hospital.
The second connection I made today was with one of our contacts at Georgetown. I would love for the Foundation to be able to assist Linda (Mattie's childlife specialist) in some way during the holiday season. I am very aware of the fact that many organizations plan all sorts of activities and bring gifts for the children during the holidays, but there isn't much planned for the caregivers of these children. This is where I believe the Foundation can assist with an activity. I have brainstormed three possible activities and am looking for feedback from the hospital's perspective.
The final connection I made today was with Dr. Shad (the director of the pediatric HEM/ONC practice at Georgetown). Dr. Shad just landed in Brazil when she got my message, yet despite her travels, she still responded immediately. She is a remarkable lady and physician, and I was so happy that she responded positively to some of my ideas I presented to her electronically. Hopefully next week, I will be able to meet with the mental health staff and Dr. Shad to discuss these ideas further.
Despite feeling a bit lost today and out of sorts, I did try to focus my energy on getting some things accomplished. That was a good feeling naturally, and my motivator behind my actions is always Mattie. It is also my goal to begin walking again. It sounds good in theory and I feel better motivated to do this now, but then I take one look at this weather and I have second thoughts. I do think having some sort of exercise routine will be good for my body and head, but I am very aware of the months of atrophy I experienced while living in the hospital. A way of life I continue to be paying for physically and psychologically.
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