“Many Fears Are Born of Fatigue and Loneliness.” Max Erhmann
As I stare at these words above, I feel somewhat in a place of silence. Silence because what more can I possibly do at this point in time to make the world a more empathetic and compassionate place to live in? Silence because I am just absolutely and utterly exhausted. Not exhausted in the sense of giving up or sitting back and throwing my hands in the air for others to take on. Exhausted from the constant fight, obstacles and hurdles to achieve this world I so desire.
‘We’ are told that in today’s society we have come a long way in regards to inclusion and ‘acceptance’ for individuals with a disability. We are reminded ‘Gone are the days where children are taken from their parents and placed in an institution to be forgotten about and seen as a sin of the family’. What are we doing today to ensure the feelings of isolation, pity and charity cases are not left as a weighted burden on the family? Today I listened to a sermon at church which had me a blubbering wreck! I reached that point of enough is enough. Each and every day I read, listen to and feel the weight most families are facing at every waking moment to fight for their child’s life. Stories of needing to fight for funding, fight for necessary equipment, fight for respite, fight for their child to be included in their community, struggles of sleep deprivation, anxiety as to whether their child will need suction, oxygen or seizure management throughout the darkest of nights. Nervousness as to whether their own faith, hope and strength will be enough to protect their child from the world which surrounds them.
I am one of these parents. We are exhausted!
We are far from weak though and are definitely not charity cases or a burden to society. We deserve to be recognised for the role we play each and every day as a nurse, therapist, teacher, social worker, nutritionist and advocate. We should not be made to feel thankful for how society has come along and how much better off we and our children are. The truth is, we are all one and should be treated as such. Our governments need to recognise this. Our systems need to change, policies, regulations and legislation need to reflect this and this needs to happen now. No more waiting, no more ‘things take time’. No more trying to hide our vulnerable and marginalised members of society away or told to give up on your child or loved one should you be at a point of absolute and complete exhaustion, with nowhere to turn. Now is the time.
Without the support, empathy and compassion for each and every person in our community…there is fear. As I sit here though, on this Sunday morning, within these walls of love and protection I feel silence.
"The world is getting too small for both Us and a Them. Us and Them have become codependent, intertwined, fixed to one another. We have no separate fates, but are bound together in one. And our fear of one another is the only thing capable of our undoing." Sam Killerman.
Here I sit in a glowing cocoon,
A silky case, Spun to perfection
Wrapping, spiralling, full of protection,
Nothing less.
Here I sit, in a glowing cocoon
Just us, you and I,
As the world whirls by,
Nothing less
Here I sit, in a glowing cocoon,
In awe of a jewels preciousness,
We are nothing more,
Nothing less.
Here we sit, together in this cocoon,
Some in presence, some in illusion
We are all one, each as precious as the next,
Nothing less
In this cocoon full of Ruby’s, let us shine and celebrate, unite and spin the worlds cocoon to protect and support all who need a shining gem in the hours of extreme darkness.
With love, and peace.
xx
