Daisy is 15 years old and cannot talk, in fact Daisy can’t do most things we all take for granted, you see, although physically she is a BIG 15-year-old girl, mentally she is 10 months old. Imagine what that’s like!
If I had a pound every time I’ve uttered the words ‘Daisy cannot talk’ I’d be very rich indeed but the ‘not talking’ is just a small element of her problems.
Daisy is classed as PMLD which to most of the population means very little but to those thrust into the world of ‘special needs’ means Profound Multiple Learning Difficulties’ She has never been given a ‘real’ diagnosis though and throughout the years we have had umpteen ‘syndromes’ thrown into the pot. Retts, Angleman, Prada Willi, the list goes on and on, Google was needed for all of them, none of them came up trumps. Daisy is unable to communicate or understand language and through her frustrations can get a tad agitated! She lives in a world that doesn’t tolerate or understand. Daisy has no clue when people stare, laugh, judge, but I (we) do and I am so sad for the life I have given her.
Daisy has epilepsy suffering seizures every 2 – 3 weeks.
Daisy will never have a boyfriend, husband, lover (why did I choose that order?) She will never steal my clothes, handbags or make up, never ask for an iPad or iPhone for her birthday, never play her music too loud (Harvey are you reading this?), never get drunk (Harvey are you reading this?)………many parents would think these are blessings but not me, I’d love her to do all the above and more.
My posts will be about Daisy’s day to day life and the struggles we face as a family (well, actually the struggles I face, everyone else has buggered off) just trying to lead at best a ‘normal’ life. I may not always be politically correct so please don’t take offence, they are only words! I hope it will show readers that life can be shitty at times but if you can laugh at adversity it can, with the help of wine and chocolate, be tolerable…..just!
I’m a wife and mum of two. My hubby Nick works in West Africa and pops home every six weeks to see me, my son Harvey is a first year Law student at University of Birmingham, a clever boy who obviously takes after me! Me, I work (use the term loosely) in hospital pharmacy and try to make clinical trials run nice and smoothly.
I love all trash reality tv, TOWIE, Love Island, Ex on the Beach, Housewives of just about everywhere……..you get the picture, I also love fashion, shopping, spending my husbands money, wine and chocolate.
Daisy has consumed my life for the last 15 years, I’ve cried (a lot), laughed, worried and been immensely frustrated by all that comes with having a ‘special needs child’ but I don’t let her disability stop me being me and never will.