The journey of siblings of disabled children is so eloquently written in this piece, it literally took my breath away.
Having two sons and one daughter it was always expected that the two boys would share a bedroom.
However the relentlessly long sleepless nights and lack of personal space finally took its toll about 3 years ago when Josh, then aged 7 could no longer cope with the pressures of keeping up with his schoolwork and maintaining general living while so sleep deprived. He broke down in tears and sobbed at his inability to cope in the conditions of sharing a bedroom with Dylan. From this point onwards Dylan slept in Grace’s pretty pink room while she bedded down with Josh in what was originally the boys room.
Josh and Grace have always been giving and considerate siblings to Dylan but I have often wondered about the constant low grade pressure this has on them. The pressure thats always gently simmering away whilst they try and grow and develop into little people themselves, always considering Dylans needs and how what they do as they grow and develop into higher functioning individuals affects Dylan who often seems so left behind by them.
I remember how upset Josh was when he found his favourite book stuffed under Dylans bed. Dylans favourite behavioural stim at the time was to deeply cough up phlegm and spit it onto a flat shiny surface to swirl and make patterns with it using his fingers.
The shiny embossed pages of Josh’s book was perfect for this activity and by the time Dylans use for it had been discovered the pages had dried into a thick smelly congealed mess. The book had to be trashed and Josh was gutted.
Over the years there have been countless allowances made for toys being broken, furniture being destroyed and spills, tears and clumsy crumpling of well loved treasures.
All destruction is created without understanding of the upset it quietly causes and Josh and Grace do all they can to gently reassure Dylan “it’s okay, I know you didn’t mean to” before going off and licking the open wounds of having their prized possessions ruined once more.
Their resilience is simply breathtaking.