Yep, it's about time that me and some of those other brave women I know out there, put down some of our thoughts, struggles and dreams that come with having kids with disabilities. For 13 years I've cried, laughed till I cried, ranted and raved, swore and stamped my feet, campaigned and charmed, found many brick walls to hit my head against, inspired and been inspired and changed by the child in my life.
I've never wanted pity, but I have sought compassion and understanding. I never wanted special, just the chance to be ordinary and extra-ordinary with the same hopes and dreams as any parent. What does any parent really want for their child? For them to be happy, have friends, be given a chance to thrive at what they love, to fulfil their potential, whatever that potential might be, to be visible, to be treated fairly, to be given a chance or sometimes, just simply to live and breathe.
I have shared grief with mothers who have lost their children; terror with those who have a constant threat of death hanging over their precious child; frustration with those who face such little understanding of the small person that they love and overwhelming humility at the human capacity for survival in the face of the most unlikely odds.
Some rambling thoughts of mine as to why it might be a good idea to capture some of this gold dust and share it around the global internet village we now inhabit daily. I hope you will join us and share your stories too.
Hey Murph
ReplyDeleteThanks for taking the first steps on what I hope will be a long road. There is so much to share and so much wisdom out there - and it's not about pity or sympathy or mysery. It's about rights and strength and attitudes - and bloody hard work too.
I was once told that having a child with a disability is like booking a holiday in France and finding yourself in Greece instead (or it could have been Iceland, no matter). Nice, but different. Problem is, it is also all too often inaccesible, unwelcoming and feels more like an alien planet than earth (no offence intended Greece or Iceland!)
Hope this Blog will help create a map and share the strategies with others
e x