Reply to Feeling so blue...How to live with DD's chronic illness?

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[quote=Anonymous]We have been in a similar situation.   One book I read early on when I realized that this condition may not go away was "Conquering your child's chronic pain" by Lonnie Zeltzer who runs a pediatric pain clinic.  It doesn't have magic answers, but some good perspective and some good questions to ask yourself in the book.  A lot of stories with GI issues - too.   Book was a wake up call for me on sibling issues and also how to help DC move forward.    We also have an unusual condition - but if the conditions that are close enough to it, I read a lot- because I learn how people cope, their strategies for daily family/school life or even stuff like what to ask for in IEP, etc..      I hear you - I often mourn our old life.   And something as simple as going to get ice cream as a family - especially in the summer is hard. I also found that I learned from a friend to embrace the new normal, but fight hard for the best chance going forward.

Wishing you and your family the best. [/quote]

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