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

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[quote=Anonymous]

OP -  I would take time to reread the posts that have been shared as they are offering very speciific ideas.  Question - it does seem that your daughter is able to manage things to go to school, is this correct?  If so, could there be some sort of psychological impact of her condition being the center of "family life" when it is not the center of her "school life" dynamic that you and DH need to examine together with a professional.

a- There is no reason why you and DH can't go out on a regular basis by hiring a college student or nursing student from an area college to be there.  AU has a sitter list, Marymount U in Arlington has a list called Bernie's list, plus there is Sitters.com that you could join to post your very specific needs.

b- You also need to be sure that you  are getting out and doing on your own and DH,too, something you just choose to do.  Exercise of some sort might be a very good options.

c- Younger DD should have some activities or chances for going out socially with friend of her own or you will soon have two in therapy.  At the same time do provide fun options for the two girls to do things together, too.

d- Family vacations can happen but start off slowly.  As suggested find a home or hotel to rent right on a body of water - Chesapeake Bay for one  or near Annapolis or Baltimore and figure out the most direct route and shortest travel time during the day or evening.  There is no reason why DD and you all can't go for a week - if not to a beach at first within an hour of DC.   It might be best to even just go into the City to a reall nice hotel for a day or two as a surprise and plan a couple of activities both girls would enjoy or simply focus on staying at hotel and going out as one chooses.  [b]A rented home would be best where you could control her diet, family could go and do naturally and DD would still have  direct access as needed.[/b]

It sound as if your entire family is paralyzed by DD's health condition and perhaps this has just become the "family home dynamics" that no one knows how to brake.

Overall has any thought been given to try a low dose anti-anxiety med with DD - obviously working with a team who  has understanding of interaction with any meds for her physical condition.  Again if DD with planning can operate fine at school, then something is off on the home/family scene, BUT it should be hopeful that with some work things could be figured out at home, too.  If you reach a point of impasse, perhaps a new specialist team to look over all records to get a second opinion might also be warranted.

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