Saturday, Apr. 23, 2005 | 10:45 a.m.



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Still More Coolness

CF

Today I searched for "cystic fibrosis" as an interest on LiveJournal. There are communities and individuals listed, so I clicked around... and realized, as I started crying, that I have almost completely avoided the CF community since Jasmine died.

My main "beef" with the community has always been proselytizing. Every time I tried to join a CF community for support in parenting Jasmine, the issue of religion always came up, and always included someone telling me everything would be better if I were Christian. And if it wasn't that, then it was simply feeling alien because I view things like death and illness from a different perspective, largely due to my religious beliefs. I'm sure other parents like me are out there -- parents who have a more universal approach to God and maybe some alternative beliefs about spirituality in general -- but I never heard them in those forums, so I stopped going.

Then when Jasmine died, I reached out to grieving forums. That didn't work either, for much the same reasons. I felt sorry for parents who felt that they had somehow displeased God and that losing their child was thier punishment. I also felt like my circumstance was different because Jasmine had a chronic illness. We had been thinking about the possibility of her death ever since her diagnosis, which means when it happened, we reacted very differently than someone who suddenly and/or violently loses a child. So I gently disengaged because I didn't particularly feel supported or at home. And I've been okay for the most part, working through things on my own with friends and family.

But today I looked on LJ for whatever reason and found myself close to sobbing as I read the words of people still very much in the throes of fighting CF, mostly young people. I spent some time updating the journal on Jasmine's memorial site and updating her friends list with some of them. In some ways, denying CF as part of my life is denying Jasmine as part of my life. And as much as directly dealing with it is behind me, I can't pretend that I don't care about it or feel a connection with people who live with it.

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Recent Entries ...
Go Here - Tuesday, Aug. 29, 2006
Short, But Sad Good-bye - Sunday, Oct. 16, 2005
Jasmine's Story ... Our Story - Friday, Sept. 30, 2005
Ache - Thursday, Sept. 29, 2005
Twists & Turns - Tuesday, Sept. 27, 2005

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