Sunday, 2 March 2014

A rare child with an inspiring story

I have been meaning to start this blog for ages, but for some reason kept putting it off. On Friday it was rare disease day and this has spurred me on. My little girl is as rare as they come. Born deaf and blind as our geneticist pointed out both her sensory losses couldn't really have been more severe. Thankfully she doesn't have any other cognitive or health issues and she has found a way of being in this world which takes my breath away. We couldn't imagine in that hellish first year that our daughter would have a particularly fulling future. How would she be able to communicate without her hearing or vision?
We have had an army of people helping us from the NHS, social services and education. Five years later thanks to cochlear implants which have given her access to sound we cannot stop her talking. It's just incredible. She has some limited functional vision and she is a pretty competent long cane user. She reads and writes using Braille and has specialist support workers in school. It's not easy for her, she has to work so so hard to be alongside her peers but she is holding her own in main stream school with an army of friends who love and admire her as much as I do.
I plan to let you in on our world. Tell you about her triumphs and tragedies and how I negotiate my way as her Mum. Having Chloe has changed my life in so many ways. I wish sometimes with all my heart that she could see and hear like other children. But I wouldn't be without her despite the excruciating pain that comes with having a disabled child. She is the most warm, loving, generous, stroppy, determined and quite simply hilarious child one could wish for. She makes people smile from their bellies and I hope by sharing snippets of our life you will too.