Tonight's picture was taken in July of 2003. Mattie was 15 months old and this was his first trip to the beach. What makes me laugh about this photo was the simple fact that we were right on the beach, but Mattie preferred playing with the hose and being on the deck. Mattie loved spraying down the deck, the chairs, and himself. That brought him great fun and laughter. Of course back then my thinking was we could have stayed home and he could have done the same thing! But I learned over time to get passed that thinking and to see that we had to expose Mattie to the beach and to new things slowly. Acceptance of things had to be on his terms always, not on ours.
Quote of the day: Do you want to know who you are? Don't ask. Act! Action will delineate and define you. ~ Thomas Jefferson
Ms. Roberts moderated a panel discussion on palliative care this morning that featured five medical doctors. Two of whom were from Europe and two were from the United States. The consistent message from both countries was that palliative care is very misunderstood, by both patients and practitioners. When one hears the term palliative care, what do you think of? The number one answer is most likely..... death! You think of end of life care. However, that isn't what palliative care is at all.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms (pain, restlessness, sleeping and breathing difficulties) and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Ideally palliative care is provided early on and integrated throughout one's care. It has nothing to do with having a terminal condition.
It was a fascinating discussion and well moderated by Ms. Roberts. It was as if she knew the panelists all her life, and yet she just met them minutes before the presentation started. So she clearly has a gift for connecting with people, listening, and synthesizing information.
Thanks to the help of our board member and probono public policy guru, Brett Thompson, a wonderful press release went out today on this momentous occasion. The quotes from Congressman Michael McCaul (R-TX), Congressman Chris Van Hollen (D-MD), and Congresswoman Jackie Speier (D-CA) are very meaningful and deeply appreciated by the Foundation.
http://www.prnewswire.com/news-releases/mattie-miracle-cancer-foundation-announces-completion-of-psychosocial-standards-of-care-for-children-with-cancer-300121766.html
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