Tonight's picture was taken in March of 2009. I won't forget this moment in time, EVER! That day was a hellish bone scan. The first problem was in order to complete the scan Mattie could not drink or eat anything from the night before. Typically Mattie wasn't hungry, unless for some reason he knew he couldn't have food. It was very psychological. In any case, bone scans were probably the most pleasant of tests Mattie endured, however, that day, the radiologist reading the scans saw something he did not like. So he kept instructing the tech to do more scans. Mattie was under this scanner for close to two hours. Finally I told Mattie's child life specialist that I demanded to see the radiologist. I wanted to know what the problem was. So the doctor complied and met with me. The doctor saw something of concern in the scans, but what he did not understand was that Mattie had multiple limb salvaging surgeries. Therefore armed with that knowledge, it became clearer what he was seeing were prosthetics and scar tissue from those surgeries. If I hadn't demanded to speak with the radiologist, who knows how much longer Mattie would have been going through scans. In any case, once the process was over, we handed Mattie his favorite Dunkin Donuts treat and he started eating it before off the scanning table. He was that hungry!
Quote of the day: When it comes to understanding others, we rarely tax our imaginations. ~ Lawrence Hill
For the past couple of weeks, we have been working with two researchers at the National Cancer Institute of NIH on designing a survey to be administered to bereaved parents. Naturally, Peter and I have expertise on this issue. Expertise which we never wanted or asked for!
Clearly Mattie Miracle is passionate about advocating for the psychosocial needs of children with cancer and their families, as well as increasing access to psychosocial services. However, if you asked me what time point in cancer treatment needs the most psychosocial attention, I would say end of life and bereavement support. When I say attention..... I mean from a research standpoint. Because obviously I am adamant that actual support is needed throughout the journey!
The survey is quite comprehensive and takes about 20 minutes to complete. Mainly because there are also open ended questions, which give the participant the opportunity to expound on an answer choice. The reason the researchers needed us specifically is because we are members of a closed Facebook group for bereaved parents. It is through this closed group that Peter is recruiting members to complete the survey.
Peter is more active on this group than I am. So I am enjoying (not sure that is the right word), watching how members of the group are reacting to the survey. Many of them are thrilled that their experiences are being given a voice. Like we suspected so many of them did not get the much needed support in the moment, or NOW. I say now, because researchers truly don't get that the loss of a child isn't something you get over. It is a life long journey, that unfortunately doesn't end after the first year of mourning..... as our society seems to deem as socially acceptable! In any case, I am hoping these parent insights can eventually alter the way care is provided.
I am not sure why Peter relates to this closed Facebook group better than I do. It actually surprises me, since I really do like electronic support. But I learned early on after Mattie's death, that the support I need can't come from other bereaved parents. I went to one and ONLY one support group meeting at the hospital. The meeting left me so angry at the group leaders and at one mom in the group, that I vowed never to go back to that group or any bereavement group in general. In the group that I attended, one mom monopolized the entire hour and then she had the audacity to tell the rest of us that her child's cancer treatment was worse than ours and therefore her loss was more significant. She is entitled to feel that way, but the leaders should have responded and helped the rest of us deal with that blow. In any case, though this support group meeting took place in November of 2009, I can still remember the feelings it evoked. Unfortunately those feelings get translated into any social experience I have with other bereaved parents.
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