Have NC ed for this. I am a regular poster on the SN board. I don't know why I am posting; maybe just to get this horrible guilt off my chest and vent. I am not looking for medical advice. Trust me when I say I have done all I can.
I have a chronically ill teen DD. Her illness is of a type that is invisible but affects her whole life. Special diet, special hours, special tutoring.....Lots of missed school, outings with friends, holidays and so on. There is no cure, only palliative. On a good day you would not know she was ill. On a bad day she cant even get out of bed. Often she says she wishes she could die. Before you ask, she is on anti depressants and in therapy. So am I.
We have all the support we are entitled to. I am still exhausted mentally more than physically.
I feel terribly guilty that I brought her into a world where I can only see suffering for years. I feel guilty that I have no time for D'S. I feel guilty that I have no time for DH. I feel guilty that in spite of being very bright her opportunities have been curtailed by her illness. I feel guilty that her friends have stopped asking after her health and are gradually shunning her because she cant keep up with them.
It is the worst feeling in the world when your child says "Mama i am tired of it all. I cant go on.' and you can't help them at all.