Thursday, March 15, 2012Tonight's picture was taken in February of 2003. Mattie was 10 months old and by that point zooming around in his "tot wheels." Mattie could navigate corners, hallways, and tight spaces with ease. Mattie typically would follow me into the kitchen and some how he figured out how to open the refrigerator door while at the same time sitting in something with wheels. To me that was remarkable, but he was motivated and intrigued by the refrigerator, all its parts, and contents inside.
Quote of the day: Courage is like a muscle. We strengthen it with use. ~ Ruth Gordon
I came across this quote tonight and it just spoke to me. It captures how I am feeling. The list of my frustrations associated with today are TOO numerous to mention and they also wouldn't be appropriate for all audiences to hear. So therefore, like a good 20% of other things I feel, I don't write about it. But to plan this Symposium took and takes great courage. It is unlike any other conference or event that I have previously planned and I think one reason for this maybe because the event is occurring on Capitol Hill. A place that has so many regulations it is hard to believe at times that it can function. Yet in order to have an event there, I need to follow certain guidelines which impacts our Foundation's flexibility and at times creativity.
In addition, I got a follow up phone call from my internist today who shared her thoughts about my medical condition. Thoughts which I did not necessarily agree with. I understand the uncertainty of my issue.... I have several masses inside of me that can't be biopsied. I get it, but I also get that radical surgeries and jumping to conclusions are also not wise. Whatever I decide, it will have consequences, and I absolutely despise when a doctor tells me what I should be doing without having the foggiest notion of the psychological ramifications of this suggestion. As if the psychological impact of a decision doesn't even need to be weighed! This call set me over the edge, and again it made me reflect on tonight's quote. I try very hard to become educated about my medical health and not get swept away by quick medical pronouncements. Mattie's case taught me very well. I learned that I have to ask questions, and when things don't make sense, ask even more questions. In addition, the scary part is doctors do not know everything as it comes to your health and they certainly do not have all the solutions to every medical problem. If they did, Mattie would still be alive today. So I am left to advocate for myself, make sense out of what I am hearing and try to make the most sound judgments possible.
Balancing the Foundation work and this medical issue right now is overwhelming and as I told Mattie's chaplain on Tuesday night, there are times I feel like I am going to crack up. Or times I feel like I am all alone in this process, and with my feelings of loss (naturally Peter is right alone side me with this, but we can't always process our feelings together, it is too real for both of us). What it comes down to is I have feelings others can't always get or handle, and therefore, this year I have noticed that I have stopped talking to my friends about these feelings. I am a verbal person and an introspective person, and what I must conclude is that parents who have lost a child are really at the end of the day are left to suffer inside. Naturally that may sound harsh, but based on the day I have had, this is as nicely as I feel I can put it.
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