Tonight's picture was taken in April of 2007. This was the morning of Mattie's fifth birthday party. This was a party to REMEMBER! As you can see from the cake, Mattie was in love with Lightning McQueen and that entire Pixar movie. That year we held Mattie's party at the National Zoo. Good in theory, but we learned the hard way that the Zoo hosts the party RAIN OR SHINE. On the day of Mattie's party it was raining, not just a a drizzle, but more like a torrential downpour. I thought the party was going to be a disaster and everyone was going to be miserable. It may have been the best party ever for several reasons.... 1) the Zoo was empty, as the zoo staff gave us a tour, it was like having the Zoo all to ourselves, 2) animals apparently like being out in the rain, and those animals you rarely see were out and about, and 3) kids love getting wet, they enjoyed being under umbrellas and felt like the zoo tour was a true adventure, as it felt like we were walking in a rain forest.
Quote of the day: A real conversation always contains an invitation. You are inviting another person to reveal herself or himself to you, to tell you who they are or what they want. ~ David Whyte
For the last couple of months, we have been helping researchers with the design of a bereavement survey. A survey that could be completed by parents who lost a child to cancer. It has been an interesting experience to share our insights into the survey's design and our view point on the content being solicited. Peter is an active member on a closed bereavement group on Facebook. I am a member too, but the group has more significance to Peter. I would imagine because we approach the group needing different things from it.
If I am going to talk about Mattie and my experiences, I would like others to really listen and respond to the content and the feelings. However, what I have learned from DAY ONE after losing Mattie, is that my support can't come from fellow bereaved parents. What I am also well aware of is that many other bereaved parents would disagree with me, as they feel that only those of us in this special group understand each other. I have yet to find that, and I suspect this is the case because we are all grieving and to each of us, our grief is the worst. Talking about loss ironically can set up a sick form of competition.... "my loss is worse than yours," "my child suffered more," and the list goes on. All of these comments have been directed to me, so I am not manufacturing this from the top of my head.
Nonetheless, the researchers asked Peter to post this bereavement survey on the closed Facebook group site. This group has over 1,000 members and only 100 surveys need to be completed to collect significant data. Therefore only ten percent of the membership really needs to respond. The response rate is what surprises me as well as the reaction to the survey. As a fellow bereaved parent, I thought others would jump at the chance to talk about their experiences and what was missing from their child's end of life care and their own bereavement support. I do think parents feel end of life and bereavement are areas very poorly supported at treatment sites. But despite that, a majority of parents appear hesitant to take the survey. Keep in mind that the survey links people OFF of Facebook and into a secure survey site. So sensitive data is not being captured by Facebook. Which has clearly been a consistent problem with Facebook.
What I surmise is the survey is too intense and emotional for parents to get through. But this has me pausing because I took the survey and was energized to complete it. I spent about thirty minutes on the survey because I wanted to give detailed responses to any open ended question asked. As such feedback can only help future psychosocial care. Clinicians don't know what is working and what isn't working without our feedback. I also fine anytime I can meaningfully share our experiences and story, it is beneficial. But this is where I again differ from a good chunk of bereaved parents. So naturally the mental health professional in me asks WHY? Why am I so different?
Certainly there could be a host of reasons, but I think first and foremost the main reason is because I reflect on Mattie's loss daily. Whether through this blog or in our Foundation work. Talking and reflecting about Mattie's life and loss are like a fifth appendage in me. It comes naturally like brushing my teeth. Therefore, completing this survey was stimulating and gave me the opportunity to share what didn't and still doesn't work with professionals who potentially can change how care is provided to future families.
No comments:
Post a Comment