Small Sisters

Small Sisters

Thursday, May 11, 2017


“Allow yourself to be where you are”
As a Carer, who are we? What is our purpose and identity? It feels like a lifetime ago that I thought about and planned things like dinner parties and social outings, hair-cuts and lazy Sunday ‘sleep-ins’. I know and appreciate that this generally comes hand in hand with having been blessed with children, but as a parent and caregiver when do we get this back? When do we see that glimmer of light for things to return to as they once were? When do we get a full nights sleep without having one eye and ear open in case of a vomiting episode, seizure or escapee? When do we allow ourselves to just let go and find ourselves again? This is a question I’ve been pondering for a while now.

I do not have the answer yet, and maybe I will never know when this time may be. The important lesson I have learnt and continue to remind myself of is that all that matters is this moment. This exact present moment is all we have and anything else is just a thought. Yes, this can be hard to swallow as we sit in the darkness watching helplessly as your precious little being works through a soaring temperature, shivering in their bed, when you are pulled suddenly from a deep (and much needed) slumber to the sound of vomiting and aspiration or to that feeling and build-up of a seizure where you find yourself helpless and answerless. How did we get here?

Who am I? The life I once had, those many moons ago are a distant memory. A life once full of friends, nights out, shopping sprees, late nights, lazy mornings, last minute dinners out, weekends away, the dream house to purchase, a career to chase and a vision for the life we take for granted. From experience, I can tell you- nothing should be taken for granted. I have learnt that friends may not have been true friends, nights out were fun yet the morning after- not so much! Shopping sprees fill a void then leave us empty, late nights and lazy mornings take up precious time to experience the wonders of the world we are blessed to be a part of. The dream house- is but just a dream and just a house and that career is just a job!

What truly matters more than anything we experience in our life time is the experience of love and gratitude. The key is to love with our whole heart and appreciate all we have, no matter how little this may be, appreciate and be grateful.

Over the past few years where I have been dragged through extreme darkness, bumps and turbulence, there comes a corner. There comes a glimmer of light and with each experience, comes realisation and the increasing awareness for this moment. I cannot control my life, but navigate it through the journey handed to me and I shall navigate with complete compassion, empathy, love, gratitude and with that I discover acceptance.

I accept my life as it is now. I accept that I am in a process of discovery and do not hold the answers. I cannot change my beautiful children and the challenges they face but hold belief and faith that all will be okay.

I am thankful.

“Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance,
chaos to order, confusion to clarity.
It can turn a meal into a feast,
a house into a home, a stranger into a friend.
Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow.”
Melody Beattie

Saturday, February 11, 2017

Ruby Choose-Day!

"She would never say where she came from
Yesterday don't matter if it's gone
While the sun is bright
Or in the darkest night
No one knows, she comes and goes"

As the Rolling Stones so famously recorded fifty years ago last month, about a free spirited woman. Ruby Tuesday is a song that has been repeating in my auditory sphere recently and as I listen to the words- they mean so much more to me than that of one free spirited woman groupie!

Not only does the name 'Ruby' obviously hit home with me and bring up some deep, guarded emotions, but the words and melody just bathe my soul and being in the deep rooted belief system I have that 'all will be okay', and to be free and live in peace is the ultimate goal. Not in a sense of taking off in a caravan wearing tie dyed clothes and burning incense, but a deep connection with myself. Having an understanding that no matter what the external body may look like or have challenges with, arms and legs which move involuntarily, a mouth that does not utter words in the 'usual' sense. Legs and feet which may not support you when upright and the need to rely on someone else for every aspect of daily living and survival on earth. Having and gaining this realisation that regardless of these differences and challenges in life, life is still good. Life is still a blessing and so much true life, peace and freedom can come out of such adversities.

"Don't question why she needs to be so free
She'll tell you it's the only way to be
She just can't be chained
To a life where nothings gained
And nothings lost, at such a cost"

So where am I going with this blog today? To be honest, I am unsure, however when I feel the need to write, I just write!

Last week we received an updated report from an MRI carried out on Ruby's Brain, Spinal Cord and spine. The last was in 2011 when life was somewhat turbulent and I was in a very dark place. The purpose of the MRI is in preparation for spinal surgery coming up later this year to fuse Ruby's spine together. Not a nice procedure by any means and has taken a lot of thought and deep questioning of 'why'? The short answer is, to give quality of life in the upcoming years. To allow organs the space to work how they need to, for breathing to be less laboured, for sitting and standing to be more comfortable and for Ruby's overall comfort. After getting to the hospital and being told that there had been an error made with the paperwork sent out, that Ruby would need a General Anaesthetic for the MRI to be conducted and this would be another date, you can guess that I wasn't leaving without at least giving it a go! So, I had a little chat to Ruby and explained that we want to avoid the anaesthetic and we will make her positioning as comfortable and supported as possible, with relaxation music and me by her side throughout the 45 minute procedure. She listened! My little Ruby Star did it- surprised the medical staff yet again. She isn't your 'usual' 7 year old child I explained!!!

Then the day came where the report was ready. The time where we would get to hear all that is going on in my little girls body and why for the past six and a half years she has been handed such challenges that most people do not experience in a life time. Guess what- the MRI had nothing! The brain is 'normal' the spinal chord is 'normal'. The spine itself has a left curvature (which we knew!). Other than that doctors can not explain what is going on!!

You see, to me Ruby is whole. Ruby is perfect and Ruby is healed. Ruby is here to give me a kick up the butt and has created a life I never dreamt of. A life where I found myself, a life where I am able to put my vision and values and mission in place and with that take both my girls on the journey to continue on this path of knowing what true 'free spirit' is.

"There's no time to lose", I heard her say
Catch your dreams before they slip away
Dying all the time
Lose your dreams and you will lose your mind
Ain't life unkind?

I believe these words are not only about Ruby but written by Ruby also. So with this, take the words as you may. It is not 'Ruby Tuesday'  but in our eyes 'Ruby Choose-Day'. What do you choose in life and how do you intend to live, to be free, in peace and believe that all will be okay?

We're in this together. xx

Saturday, June 18, 2016

Sitting in a cocoon.

“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.

Wednesday, December 30, 2015

Farewell to the year that was.

The year draws to an end and here we are. Just here, in this present moment. Nothing more, nothing less. What has the past year delivered to you? What single defining moments do you recall and take with you through to the New Year embarking upon us? Moments which, at the time you felt with every ounce of flesh, bone, muscle, heart beat and your soul.

This may seem a little deep and challenging to digest, however this is what I personally have come to realise, but yet struggle to accept, learn and move forward with a sense of trust and freedom from thought.

I encourage you to take a look at the art work by Grant Stevens ‘Tranquillity Falls’. I found myself drawn to the Gallery of Modern Art, Brisbane a few months ago and stood, mesmerised, taken to another place, a beautiful, tranquil, joyful, peaceful place, almost like a meditative state. In front of me was this digital art display which for once, took all thought away from me. The words and sound did not require thought, rather a feeling. A soul soothing, gut reaching feeling of pure love and oneness with myself. In that moment nothing else mattered. The words “Challenges are gifts that force us to search for a new centre of gravity. Don’t fight them, just find a different way to stand”, resonate so deeply with me.  I have embedded this so deeply in my being that I just know challenges will come, and they will too pass. I cannot control nor avoid them. I can accept, show gratitude and move forward.

I have the absolute delight and gratitude for what I have faced and overcome, for without such challenges, battles, fights, negativity and hostility I would not be where I am. At the time I would take personally and really suffer, lose breath, make myself exhausted and sick. The moment I chose to take these challenges in my stride and realise things do not happen TO me, they happen and it’s up to me to take them how I choose. I have the freedom of choice and the power to embrace them and choose darkness or light. Light may not happen immediately as generally us human beings struggle with understanding our ability to have choice, but when you realise, the light appears through the darkness sooner and I can only imagine that one day soon I’ll live each and every day in light, love and peace.

I have the privilege to be building upon my life’s purpose and calling to help our little children, and their families, facing what we see as big battles. To our human adult eyes we may see pain, hurt, suffering and a life less fulfilled as we would dream of for our little ones. I have lived this, I have breathed this and boy did it bring me to the deepest depths of depression, anxiety, sadness and hopelessness. One thing I would pray for was for my little girl’s pain to be taken away. For her to go even a few hours free from pain. Three and a half years of constant 24/7 screaming then came to an end. The screaming stopped. Just withdrew from her tiny body. This happened overnight. I cannot explain what happened, I do not have the answers of what was creating such suffering, but I know she is at peace now. Each and every day I show gratitude, as I know my little girl is happy and loving life. She may be non-verbal, she may be non-mobile, she may be fed through a gastrostomy tube and require 24/7 care, but she chose to be here and live her life. Ruby is that precious gem that we all search for in our own lives. That glimmer of hope, of beauty, of richness and sparkle. The truth is, each and every one of us has it, it sometimes takes moments of heartache and reaching rock bottom to see that precious gem shining from a distance. The moment you make the choice to go after it, draw it in, hold it close and look at it every day, is the moment you will realise you just need to find a new centre of gravity.

“We often don’t even realise who we are meant to be because we are so busy trying to live out someone else’s ideas, but other people and their opinions hold no power in defining our destiny” (Grant Stevens, Tranquillity Falls 2013).

I have no great plans, desires or dreams for the year ahead. I will, however, show gratitude for the year that has been and my learnings from it. I will also reaffirm to myself the importance for living in the now, moment by moment and trusting that all will happen as it should. This is my choice for the year. What will yours be?

Much love and peace. xx

Sunday, April 27, 2014

The peace of a traffic jam!

I found myself, the other day, in a familiar yet frustrating situation. For what is so predictable and typical of my journey, I left with anticipation and hope that ‘pfffffft, it’s going to be different today’! Nope, same as it has been 99 percent of times travelled this road! Road block, back to back traffic, standstill, gridlock, congestion, rush hour, traffic jam, I could continue. All of which aren’t overly pleasant words or phrases. The majority would probably agree that traffic jams are something we would prefer to not encounter, especially on a daily or weekly basis. So why was this day so awakening to me? As my anger and frustration grew in anticipation for what was around the corner, which I couldn’t yet get a glimpse of, but in the pit of my stomach knew was about to confront me, I came to a halt and just let go.

You see, what I am discovering is that we spend our lives speeding along trying to avoid hurdles and speed bumps, trying to keep everyone happy for a smooth ride, fast tracking every moment with family, friends, work colleagues and ourselves just to try and reach your final destination. Now, where might this destination be? For me, I have learnt and continue to learn that my destination doesn’t have an end point. This therefore isn’t a final destination but my ambition, passion, vision and mission for my own life. Just like a business plan, we each need an objective, vision and mission for where we are heading. This may be a temporary or mobile goal, but it’s what YOU want to achieve, and when you do it only intensifies and tempts us to reach for another goal on our journey. There are of course plenty of times when I have felt that this journey is so darn hard and excruciatingly painful, like a road block hits me and knocks me back at a hundred miles an hour, sometimes off my feet and I hit the floor with an almighty thud! This can be very painful indeed and makes me question what on earth am I doing? Why on earth am I doing this? Then the jam starts to part way and I can see what’s in front of me and what I am driving toward. I just have to get through these knock backs and hold ups and persevere clutching hold of the faith and trust that I am on the road I need to be and once I overcome this moment, it will all become clear.

“The worst use of time in a person’s life is when he waits for the traffic lights changing from red into green!”
Vikrant Parsai

Learning to accept a situation and dealing with it is one of the toughest learning curves we face.  I sit in the congestion, staring at the concrete barriers, observing the other human beings sat staring aimlessly, just as vulnerable yet just as important as the next person. Most have a blank look upon their faces, some are obviously struggling with the situation, trying to push their way past everyone else but not getting any further and some are genuinely concerned and frantically on the phone trying to organise and re-shuffle the rest of their day. I have now decided to embrace the moment and savour the inner peace growing inside me.  A midst the chaos surrounding me, I listen to the lyrics of a song:

Had a cloudy head, yeah I know that
Since the fog cleared I'll never go back
And I'm grateful they shot me down or the person I am I would not be now
Yeah, it ain't good to be bullet proof cause in the end that bullet will be good for you
When I think of all the things that I wouldn't do now if it wasn't for that one little bullet wound
That means you've gotta learn for mistakes and no one persons the same
Don't run from anything that hurts you to face each step you take you get further away
There was a time when I thought of giving up what I was living my life for didn't come
Now I haven't got time for what I wouldn't die for I know that life's short so live it up

360: Live it up.

At the end of the day, there is not a lot we can do to change a situation which hits us out of nowhere, but it is how we manage it.

"The truth is that stress doesn't come from your boss, your kids, your spouse, traffic jams, health challenges, or other circumstances. It comes from your thoughts about these circumstances."
Andrew Bernstein

My journey is happening, my vision is clear, my mission is written. I do know what on earth I am doing and why on earth I am doing it. For me, my destination is yet to be determined however I know that I will embrace and uphold my beliefs, faith and hope that everyone will too see their own vision and mission in life come to fruition. For it is only when we are placed in a traffic jam that we have the time to realise what on earth we are doing there.

"This isn't life in the fast lane, it's life in the oncoming traffic."

Wednesday, January 22, 2014

Care for your self and soul

There are twenty four hours a day given to you, to do with what you will. Hmmmmm twenty four hours, doesn't seem like much, but to many 120 hours a week are wished away to get to the weekend, where many people try to cram as much in to 48 hours as possible, before misery sets in again! Why do we do this? Why can't we enjoy each and every minute, hour and day which is on offer?

I can tell you that I have spent many hours focussing on situations which really aren't a priority or a concern of mine. These situations have generally involved worrying about others, what they think, feel, believe, perceive etc. How others see me and what I believe, how I handle situations, what I do, where I go etc. What have I been thinking? Why should I care or worry about what others think?

“If you are busy pleasing everyone, you are not being true to yourself”
― Jocelyn Murray

I have spent the past few months so completely and utterly focussed and consumed with what others think and feel. As I delve deeper and deeper into others lives, issues and worries, my breath becomes shorter, shallower and I lose who I am. Not that I know exactly who I am, but I choke and standstill for a moment....then I discover my self!

One morning a complete stranger entered my home, whom I had welcomed in.  In one moment the effect of this exasperated every ounce of 'keeping my cool' I ever had! This moment left me motionless, breathless, winded and utterly disappointed in how one human being can be so cruel and beastly. The lack of gratitude, grace and goodness was enough to shake me to pieces and question my own values and beliefs. After a good bout of discussion with likeminded humans, who I take liberty to call 'earth angels' I realised that I need to just let it go! Do not let others affect my own beliefs and values. Do not let others distort the truth I hold close and how I want to lead my life.

It's so darn hard though! To feel as though you are wading through a pond of reeves, with the gusty wind hammering every move you make, each direction you take, when would you ever feel as though you are moving in the same direction as the world around you? The truth is, until you let the external factors go, let other people's issues and dramas go, meditate on your own beliefs and your own personal mantra to look after YOURSELF first, you will continue to feel stuck.

"breath is the private mantra
guiding prayer
follow your feet knees hips
belly heart hands
be willing to lose your balance
surrender to what matters most
and dive into the unknown"

[Waiting for my life...Reclaiming the lost pieces of me, 2012, Nancy Levin]

Today was a release for me, in one moment my spirit lifted, faith restored and I realised I AM following my vision and mission for my life purpose. I am finally looking after MY SELF and from doing this I will only be able to assist those around me. From being true to myself, others will embrace this energy and vibration. Those who do not, do not matter in the grand scheme of who you are, and what you are about.

“I can't compete for likes and follows, I won't win. What I will do is pour out my heart and allow love to reach those that need it.” 
― E'yen A. Gardner

Saturday, November 23, 2013

A gallery of joy

Join me in viewing the beauty my angels bring to me each and every day.
Through tough times comes peace.