Is it just me or when the world feels like its caving in do the people around me seem to oblivious to the turmoil within. I try so hard to be honest and fair and I was taught to always be kind and take peoples feelings into account as then only good can happen but my world is crumbling. My youngest has to have 24/7 care as she has had three major surgeries this year due to her Pica but disability say she doesnt need it < she wears pullups, she is intellectually delayed and has autism and hypermobility and hypertonia but she is articulate so is seen as easy. I was lucky to get her home from hospitall unless support was in place and Im the only support as there is no one. I have got a referrral for a safe space bed which is about 5 months waiting list so at minute I have to be hypervigilant which I am already. I seem to have to fight all the time to get anywhere and I'm tired and deflated. I thought in this world of diversity that there would be more help etc for children and parents but seems yes for some and no for others. I have had to fight my whole life with things that have left me with ptsd as well as autism and I feel so alone. What do you do when you are ready to throw in the towel but at the same time know that your needed. Ive had my daughter strangle me, kick me and with afos that hurts and watched her go through major surgery and be seriously ill and meltdowns and fight to get her to school everyday even though its special needs and got her a wheelchair so when were out and her legs give in she can rest and still I feel like as a family we are being punished by a curse. Why is it disability will give high care to those who dont need or have the problems that our children have or ourselves , why do we not count or is it we dont have the right to be happy. Sometimes I think dying is better than living as living seems to be a punishment. Sorry for ranting but im so worn out and alone and I just dont know anymore.
