Tonight's picture was taken during Mattie's second birthday party. In fact, I just recently received this photo from one of Mattie's babysitters. Dana was a student of mine, and was Mattie's very first babysitter. She was excellent with Mattie. As a college educator, I had access to some wonderful young individuals who helped me once a week for a few hours with Mattie. Given then I interacted with these students for several months in classes, I could be very particular as to who I selected to work with Mattie. I only selected students to play with Mattie after my class and grading of them was over. Dana snapped this photo at Mattie's party, and recently sent it to me! I can't tell you how much it meant to receive this surprise. She is now a mom of her own, and I suspect this enables her to understand the nature of my loss much better.
Quote of the day: Successful people are always looking for opportunities to help others. Unsuccessful people are always asking, "What's in it for me?” ~ Brian Tracy
Despite the fact that it is Tuesday, I am still reflecting on many of the interactions I had with parents at Curefest. When Peter and I work this event, we are really engaged with people who come into our tent. We typically don't have time to walk around or participate in the activities. Our sole focus is to promote Mattie Miracle, educate others about the importance of psychosocial care, and in the process listen and try to understand the thoughts and feelings of each of the visitors to our tent.
This year more than ever, we interacted with MANY bereaved parents. Not only parents but the siblings of children who lost their battle. In fact, some of the people we were interacting with were so overwrought that I literally gave them several hugs. Words just didn't cut it! Needless to say, our mission for the inclusion of psychosocial care into the entire cancer experience (not just diagnosis and treatment, but into survivorship or end of life and bereavement) resonated with everyone on Sunday.
But one young girl I was never forget. She had to be in her twenties. She let us know she lost her brother to cancer. In fact, she was wearing a photo button of him. She was absolutely distraught over his death, she says her parents don't talk about his death, and therefore she can't bring it up with them. When her brother was in treatment, there was NO outlet for siblings to meet, talk, or do things together in the hospital. In fact because of HIPAA, siblings weren't even introduced to each other, or invited to a planned hospital event. Which is sad, because this would have and could still be an outlet for this young woman. It was actually painful to see her leave our tent. If she was local, it would have been easier for me to stay in touch with her, but given she lives in New England, she is much further away. I nonetheless have her email and will reach out to her. Her face and psychosocial story will remain with me and when I hear these stories I realize that our experience with Mattie, has enabled us to hear other psychosocial stories, and have the insights into the issues, concerns, and problems. Thereby, concluding that the Standards are not only nice to have, but are a necessity. Upward and onward on our mission to achieve this implementation.
1 comment:
Hi Vicki,
I am reading from last blog to where I was when we left on our trip. Your blog was impossible to read when Internet was such an issue.
I feel sorry for the sibling, you met. While I did not meet her, I will forever remember that my first bonding of friendship occurred when listening to her tell me about Christian. As she realized, I genuinely wanted to know, she didn't shorten her story but kept going. She was really lost with out him. It appeared that all was going fine in her life until conversations of Christian happened, it was then I realized the closeness, they shared. How deep the hole was in her life without him. Over time, she had experienced enough glazed eyes to end conversations or not begin them. Like the person, you met, she was left to flounder. Kimber could talk with her parents & Mike, an outlet this girl does not have. But she was the strength and pull to continue living so her role was different.
Your tent at CUREFEST was a magnet to people who had lost their child to, talk freely. It was not an organized bereavement meeting rather an unexpected chance to gather with people who really live the life of forever loss. I know the Standards of Psychsocial Support will help in so many areas that are forgotten. Those areas that are consider unimportant when they really are. They will address parts of Childhood Cancer treatment that some believe are already in place like Child life. Many of those areas need to be renewed to be really making a difference.
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