Tonight's picture was taken on January 11, 2009. We were in NYC, in order to take Mattie to Sloan Kettering to start an experimental treatment. I will never forget checking into the Affinia Gardens Hotel. They took one look at what we were balancing and Mattie's situation (dealing with cancer and being wheelchair bound) and decided to give us a suite at no extra charge. This suite was incredible. It had two bedrooms, two bathrooms, a kitchen and balconies over looking the city. As you can see, Mattie was attempting to walk or at least stand. But for the most part, Mattie could no longer take steps and move independently after his limb salvaging surgeries in November of 2008.
Quote of the day: Death. It’s around more than people realize. Because no one wants to talk about it or hear about it. It’s too sad. Too painful. Too hard. The list of reasons is endless. ~ Jessica Sorensen
I received an email today from a doctoral student who is doing research on legacy planning with bereaved parents. She was writing to see if we would help her find subjects for her study. Having been in her shoes before and knowing it can be hard to find subjects for one's dissertation, I decided to fully read her message and to learn more about her study. By training she is a child life specialist, so she already caught my attention. It is also unusual that a student would want to investigate bereavement and bereavement associated with child loss. Yet I really value research is valuable and I want to support it.
When I heard the work legacy planning, an alarm went off in my head. Peter and I went to a conference once where a social worker talked about the benefits of legacy planning. That one can do this when your child is still alive so that your child can direct how he/she wants to be remembered. Needless to say, we obviously did not have time to talk about death and dying with Mattie, nor did we do any legacy planning. Therefore the conference session made us truly depressed and also made us feel like we let Mattie down. So naturally when I read her dissertation would be examining legacy planning, my head started to shake back and forth. Until I read her definition of legacy planning and what she meant about it. Legacy planning from a child life perspective means doing something active like creating hand and footprints of the child. Some parents turn to these molds after the child dies and find great comfort in them, where as others do not.
I think it does matter the context and the environment in which hand/foot prints are created. Having these reminders is a mixed blessing, when they were created under duress they do not represent the spirit and essence of Mattie. Instead, they only remind me of the cancer. Did I know I felt this way? That I felt differently about these two different sets of molds? Not really, but when asked about them, the emotions and feelings the molds evoke provide immediate responses. What I found intriguing about this is I am not alone and there is a whole research study underway about such legacy planning methods. In any case, not only am I trying to help this student find subjects, but Peter and I agreed to be participants.
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