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September 02, 2005
Labor Day
Labor Day is always difficult for me. It's one of those holidays that never seems to end, like two Sundays in a row.
School always started before the Labor Day holiday, and my family found it really difficult to get back in the groove of very early mornings and early bedtimes after our lazy summers. We would be back in school for six or so days, and then came the Monday holiday. How easy it was to slide back into the late bedtimes resulting in really cranky mornings!
Labor Day adds yet another layer. It's telethon weekend. DMD is always on my mind, always in my head, always in my thoughts and very private in so many ways. I realize you may think that very strange. Of course, you already know I talk about DMD almost incessantly with families, researchers, clinicians, wonderful people who have companies interested in DMD, with donors, with people who have some knowledge, interest in or desire to help. For me, that is still private, simply because that these conversations are not off-hand. That makes them very personal for me. On telethon weekend, DMD is no longer private. Perfect strangers come up to me and say, "oh, this is what you do”, or “your boys had this?”, or "wow, such progress”, or some other well-meaning statement. I know it is meant in kindness, but somehow it still breaks my heart as I look backward and think about the progress we have made as a community and forward at care that needs to be made consistent. Or when I think about research hurdles that need to be conquered and about the investment in therapeutic opportunities so essential in order to buy time.
It’s not that I mind the comments really. In all honesty, one part of me is thankful that people respond; that they are reminded of my boys - and all boys with DMD - but it still hurts. It's just difficult to talk about the world of DMD in the space of ‘hello’, to describe a world in which most people have little understanding. I want everyone to be more interested - and not just on a single day. I want them to listen long enough to understand, long enough to care, long enough to participate, and, then, be willing to help make a difference.
Turn on the TV and there it is. Even with the TV off, there it is. I’m not arguing with the fundraising method. I realize it is essential in order to create visibility, but I'm simply saying that it's a very difficult day for me nonetheless...and always will be. It is a public reminder of a very personal heartbreak.
Posted by ppmd at 01:22 PM | Comments (2)