October is Global Rett Syndrome Awareness Month!
A chance for us all to raise awareness of this rare disease! We all know as parents how devastating a diagnosis of Rett syndrome is – we see and feel the impact everyday, in everything we do. None of us chose this path but it is the one we are on and we do our utmost to ensure our children live a life worth living. We know just how much they are loved and how much they give back to us. Sadly, not everyone can see that.
I know many of you will relate to this next bit – being in hospital with your son or daughter who is very poorly and having ‘the talk’! Should we resuscitate? I always know it’s coming when they can’t look at you directly and however they try to present it, whatever words they use – it always sounds like ‘why would you want your child to live when they have such a poor quality of life?’
This is not because they are uncaring but because they have not been around people with complex disabilities. All they see is someone who (obviously not at their best anyway!) cannot walk, talk or do anything purposeful with their hands and who has numerous medical issues. They do not see what you and I see – someone who has a huge zest for life, a stamina and determination that is not quashed by their disability, an ability to radiate joy and love to everyone they meet. They do not look into their eyes and see the depth of their understanding.
This is why we chose our theme this October. Please join us in sharing some positivity about life for people with Rett syndrome. Let’s show the world what a good quality of life children and adults can enjoy given the right support and opportunities. Let’s show the world what a life worth living looks like and change their perceptions of complex disability.
This is not glossing over the difficulties. We know all too well what they are and we all hope one day Rett will be a thing of the past BUT we do have joy and love in our lives that we can shout about!
#LifeWorthLiving #LovingLife #LookAtMe!