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

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[quote=Anonymous]OP, I'm so sorry. My daughter was 2 when her neurological symptoms first appeared. It's treatable, but life-long and definitely chronic.And it upended our lives in similar ways to what you face.

I, too, had an almost delayed response to the grief three years into it, and the deep mourning stage happened then for me. It sounds like you may be there now, too.

What helped: time, and support from my "tribe". You must, must, must fight isolation as best you can. Every member of your family needs perspective and you only get that by getting out of your current environment and small circle of people. And I KNOW how tough that is, but it can be done on some days in small doses.

So...(1) Join a support group - one for you and one for your daughter. Something online (facebook, etc). You will be amazed at how much it helps and at how much information flows between the members. These groups will also help you and your daughter figure out how to live with the condition day to day; (2) The younger sibling should absolutely have her own camp and alone time with you and your husband. And when school starts, I'd argue that she needs to be in a lot of different activities, to minimize the time she's "stuck" at home. And when you all are there, try very hard to accept your new normal. That means to talk to the younger girl, in age-appropriate language, about what's going on and what it sometimes means to your schedule.Don't make it a big deal.

On that point, I also believe that at the heart of a family who manages to carve out a happy life when faced with chronic disease is that they redefine what "family" means. The sooner you can accept that, the easier it will be to come up with unique and workable solutions for your family.[/quote]

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