It’s just after 6:30pm and her brother has just had a seizure in the bath. While her mum pulls him out and dries him her dad rushes upstairs to help.
And she was left alone.
It’s 11am at the retail park and suddenly her brother has disappeared. Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.
And she was left alone again.
It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment. Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.
And it feels like she isn’t there at all, even though she is.
Life feels all about her brother. She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children. She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those. She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does. She knows that isn’t what anyone wants to hear about though.
So she just stays quiet.
She does her own thing. She finds her own way of coping. She is the epitome of resilience, the definition of bravery, the personification of inner strength.
But she’s lonely. So very lonely.
She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.
Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.
These are the siblings whose loneliness we don’t like to see. We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed. It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child. We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.
So she just carries on.
Until one day she says ‘it feels like I am invisible sometimes.’
Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily. You vow to change things but nothing, nothing, will take away her loneliness.
I promise you siblings, you are NOT invisible. You are the real hero’s in all this. You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.
You may feel lonely but you are never alone.
I promise you so many other siblings understand and they have been where you are.
You got the raw deal here and I’m sorry.
This post first appeared here. Do check out my other blogs on Firefly (www.fireflyfriends.com) and my regular updates and thoughts on my Facebook page (faithmummy).