How do you prepare yourself for bad news? My 6 yr old was tested for neurofibromatosis and we've been waiting 4-6 weeks for results. He has one characteristic on his eyes which is...
Very rare in the absence of the disorder. I just can't sleep at night and can't stop thinking about how my seemingly normal child might develop these awful symptoms of the disorder over time and there is nothing we can do about it. How do I learn to cope?
i vascillate wildly between taking the stance that this is going to be one of those things where it turns out everything is fine, and fantasizing about the getting the good news...(more)6-9-2016 10:57am
moment, and then the stance that it is the worst case scenario, and imagining my new life. i try to do the best case scenario at night.