I am normally really positive about the situation we are in with Holly but as it is Rett Syndrome Awareness month I want to let you all know that it isnt always like that. Currently Adrian and I are away without Holly, I would have never imagine that we would ever do that but as we have such wonderful family we are taking the opportunity to spend some time recouping. Holly over the years has lost many skills, I have never really wanted to list them or really admit them. Whilst it was all happening to her she had such a hard time realising it and we will never truly understand what she really felt, whether she was ever really in pain or just confused. Holly used to say bye, mummy and babbled to her hearts content she played with toys, she turn pages of books (she loved books) we used to sing and do the actions to if your happy and you know it, clap your hands which she did really well and enjoyed, she loved feeding herself and getting messy but gradually all theses things slowly and stopped, she lost her voice, her hand movement, the ability to swallow so is now fed through a tube, she has breathing difficulties, she never learnt to climb, crawl, walk, she now ha developed epilepsy but throughout it all she always smiles. She has always looked at us with such warmth to tell us she is still in there. Holly needs us to dress her, as she struggles to stretch out her arms as she can not reach, she is still in nappies, cant sit well unaided. What Holly can do is fill a room with happiness she can look at you with such love and determination, she is in there, but trapped in a body that doesnt work. So far she has taught us so much, we will always try to learn how to teach her and will always try our best to be better to help her live her life to the full. Please if you can just think about what you take for granted everyday, and if you could give up just one thing, what would you give up? Help us raise awareness and money for Rett Syndrome. One day I want to tell Holly everything will be ok. xx
Posted on: Thu, 02 Oct 2014 22:00:27 +0000
Recently Viewed Topics
© 2015