Where to start?!

Each and every time I go to put my eager finger tips to the black and white keys of my laptop, my mind just pauses. My soul has so much it wants to share, however is just exhausted. Exhausted from life. Life that has been swirling and churning over the past few years, turning everything once familiar and comfortable upside down, inside out, up in the air and then crashing right down.

2018 was a year of extreme realisation. Realisations that lay deep, hidden and buried within myself. I found myself at the core of my pure existence and had to make the choice- suck it up, face the facts, trust myself and move forward in life, OR, stay stuck, living a life of inauthenticity, fear and discomfort. Either is okay, if that is what you choose. However I chose to honour and respect myself and give myself what I continuously strive to give others every day- hope, support, nurture, help and guidance. I chose to give back to me.

Of course there is everything in my life which presents challenges along the way such as my baby girl vomiting daily, fading away, in pain and discomfort to the decision of major surgery. Then the continuing concern for my other cherub and her deep rooted emotions and fear for her little sister. Months of rehab, appointments, stress, sleepless nights, questioning, confusion, research and learnings. The biggest learning has been to trust myself. Trust and know myself, what I want and need and what makes me happy. When I slowly learnt to master this, everything else became slightly more manageable.

“Bottom line is, even if you see 'em coming, you're not ready for the big moments. No one asks for their life to change, not really. But it does. So what are we, helpless? Puppets? No. The big moments are gonna come. You can't help that. It's what you do afterwards that counts. That's when you find out who you are.”
― Joss Whedon 


Lately I have been graced with various vulnerable souls seeking something. They each are going through their own challenge, fear, misery, hopelessness and sense of giving up. What is there to give up on though? What do the words 'I give up, it's out of my hands, there are no other options' going to do? How on earth will this make any situation better? Does it make you feel better or live better or make it through your day any better? What is the point of living like this when there is so much hope and love and faith to be had in the world?

I have been there, I have had those moments but they are long gone. Through every dark moment I experience, when I go to that place of loneliness, despair and feeling like I can't make my daughter better again or fix her pains and daily challenges. Instead, I put her to bed and kiss her goodnight. I walk away, breathe,  put on some soul soothing tunes and trust that tomorrow is a new day full of hope and am forever thankful for each day I get, regardless of the somewhat shitty, exhausting and gut wrenching times.

“We have our mission and we are going to complete it. So grab your straws and suck it the f*#% up.”
― Greg Rucka, Lazarus, Vol. 4: Poison

For those who know me, my family and life will be thinking 'what the'! Yes I usually speak from a more subtle and soul soothing place however this is me, this is what I need to say and this is where I am. I am still me and still the strong willed, loving, giving, nurturing half Aussie half Pommie woman I've always been, however now I choose myself. I choose to give to myself what I give to others- EVERYTHING! Happiness, hope, fun, laughter, guidance, self-care, yummy dinners, special time with loved ones and peace.

I hope you also can find this place.

xxx

Acceptance

“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

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

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.
xx

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

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."

Terry Pratchett

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

A gallery of joy

 

Join me in viewing the beauty my angels bring to me each and every day.

 

Through tough times comes peace.

 

xx

 

 

 

Letting Go

"Mummy, I wish I was Ruby"
"Why do you say that Sophie?"
"Well she gets the bestest room, and gets to spend more time with you and gets to do nothing!"

From the mouth of a six year old...and so it prompts me to another update on the journey of Realising Ruby.

Sophie could be focussed on what Ruby can't do, but instead she chooses to see the best of what Ruby has and can do. If a six year old can do this...why does it pose such a strain for adults to do? Is it due to the fact that as we grow we are conditioned and refined to focus on facts, be sensible, lose your imagination, lose sight of what it means to just enjoy life...whatever life throws at you? Is it the fact that we are constantly told to get an education, get a good job, house, car, pay off mortgage, have a family, work hard whilst building a strong united family unit, squeeze holidays into a few weeks a year, feel guilty should you wish to take a day to yourself, feel bad if your child stays home from school, work all hours of the day to just keep up to date with work, then start the cycle of rousing on your children to do their homework, even if they are only five years old. What is the world coming to?

Of course it is important to secure a job to enable you to lead the life you dream of, but does the dream include the job you are doing?... as you will spend the majority of your days at work! I have heard ever so too often that to be in a job which doesn't feel like work is an amazing opportunity and they are so very lucky. Why does luck have to be the only answer? Why can't we start to take more control over our vision, mission, choices and passion? It all starts with recognising the fear of what prevents you from pursuing your dream, then let it go.

"I lay on the bowsprit, facing astern, with the water foaming into spume under me, the masts with every sail within the moonlight, towering high above me. I became drunk with the beauty and singing rhythm of it, and for a moment I lost myself-  actually lost my life. I was set free! I dissolved in the sea, became white sails and flying spray, became beauty and rhythm, became moonlight and the ship and the high dim-starred sky! I belonged, without past or future, within peace and unity and a wild joy, within something greater than my own life" Redfield, J & Murphy, M & Timbers, S 2010, God and The Evolving Universe. This, to me, is where we need to delve into in order to just let go and be who we want to be. To not allow others to influence or hold back your passion in life.

I have come across so many individuals battling through times of hurdles, heartache, struggle, loss and the unknown. In my personal opinion it is the fear of what if, what if I don't do enough, what if I am doing too much, what if I am on the wrong track, what if no one accepts what I am doing? The list goes on and on. LET IT GO!

Of course, if I could do every single therapy with Ruby...I would, If I could travel the world to get the best medical care for Ruby...I would, If I could find a job AND provide the 24 hour care for her I would, however I have learnt to let these weighty thoughts I dragged around with me go...so I did and continue to just let them go! Instead I live in the moment, embracing what we do have together, living a simple life as far as appointments go, making choices of what is most valuable at that point in time, which people you want surrounding you and your family, what makes you comfortable and content with your day to day living. It sounds so simple, however before this comes the fear part and then the letting go!

In my personal circumstance, since I made the decision to let go, I have only seen Ruby go from strength to strength and the bond between sisters blossom each and every day.

Some people believe holding on and hanging in there are signs of great strength. However, there are times when it takes much more strength to know when to let go and then do it.” 
― Ann Landers

Bringing out the best of the worst.

Even when a person has all of life's comforts - good food, good shelter, a companion - he or she can still become unhappy when encountering a tragic situation.
Dalai Lama 


Standing on the curb of a busy pavement, peering over shoulders of families with young children shouting, waving and smiling in glee as they watch in awe as the superheroes pass by. Time then stops momentarily as my scattered, busy mind comes to a halt. I become fixated on a young boy in a pram...a pram which only comes with a hefty price, a mode of 'specialty equipment' to those who know only too well that it is one of the few prams available to children with a disability which isn't too 'ugly' or 'confronting'. This little boy became my centre of attention. To many...he would not have been seen, or once seen probably ignored. Is my perception correct, or am I just naive to the compassion the majority would show?

As the parade came to a closing end, and my mind had zoomed into this gorgeous little boy, taking in the atmosphere surrounding him I then noticed his family. A sprightly little sister jumping, clapping and having fun alongside her mother and father. All by the boys side, holding his hand like any other small child. There was a difference to me though. I get goose bumps as I re-tell this experience. Although this little boy had no voluntary movement of his own, although he could not support his head, nor shout, clap or show a smile, his eyes said it all. To him this experience of being at Movie World meant the world. Then....as the music died down and others were getting ready to shuffle along to their next ride, hot dog, icecream or gift shop the superheroes stopped, jumped off of their parade floats and head straight over to this boy. No-one waved them over, no-one stopped them and made a request. They noticed and made that decision to acknowledge this little boy who could not make a noise, or wave to his super hero. At this point every bone in my body just melted. My heart felt comforted and my mind mellowed. If this wasn't enough...Batman arrived! He made his way to the family and placed his arms out and carried the boy to the bat-mobile for photos with his sister. At this point I lost it...and that thing 'silly' women do on the television when they are crying...but trying not to...by waving their hand in front of their face like a fan....yep...that was me! I lost it!

This random act of kindness is quite rare, but the more people I come across, the more I realise that there are kind souls, there are people who want and do understand and show respect, compassion, understanding or a wanting to understand more. I shouldn't be so judgemental when it comes to others and to open up and allow more people in, who genuinely want to help. I also encourage others to do the same. I personally believe you will know who are the right people to let in, who will support and encourage you and be there during the times you need them.

The past week has been a time of more learnings for me. Faced with another upcoming challenge for my dear Ruby and those close to her I went to a dark place. Showing resilience and a sense of being un-phased just didn't cut it this time! By doing this and masking my true feelings of worry, concern, anger and fear I could not let anyone in to help. It was only from realising how I got to that pit of a dismal place and speaking about it that I was able to move through it and come out on the other side! As I always get told...I cannot control the outcome so to let it be and not curl into a ball of stress and worry!

The truth is that I am not alone, Ruby is not alone and we have the right support and best support surrounding us. We have the support we need to get through these times, no matter the outcome.

We are never alone x

Writing is a form of therapy; sometimes I wonder how all those who do not write, compose or paint can manage to escape the madness, melancholia, the panic and fear which is inherent in a human situation.
Graham Greene

Faith

Faith takes courage
Takes belief
Takes strength

Faith takes time
Takes a moment
To go the length

Faith is a journey
From a seed
To fruition

With ups, there come downs
Come learning
Come tuition

Then that pause
That pause of silence
Of realisation, of stillness

For that courage, that belief, that strength
Happened
The thought began
The journey began
Embrace the thought, embrace the journey

You are faith

Balance

So, after a crazy few months of building upon a service so incredibly close to my heart I came close to crashing and burning....again! I seem to have an issue of go go go until I can not go anymore! BALANCE is what I need. I think I have come to realise that I consider balance a 'luxury', or 'treat'. Why should I be permitted to have time to myself? Why should I be allowed to do something fun? What gives me the right to just do sweet nothing?!! Life...that's what. Why do I continue to beat myself up, wondering what others think, whether I am doing enough, pleasing others, doing enough therapy, or spending enough time with my girls ....what is this all about? I am burdened with what the Buddhists call the 'monkey mind'—the thoughts that swing from limb to limb, stopping only to scratch themselves, spit and howl. The problem with all this swinging through the vines of thoughts is that you are never where you are.

I was incredibly lucky to have been taken away from 'life as I knew it' recently and removed myself from the country. Still in disbelief that it was happening, as for once...I did not organise it, I did not plan it, I did not stress nor micro manage every single detail of the trip! The day came and we were off! As in my blog entry back in 2011, this was yet another spiritually fulfilling, life learning, soul searching, heart warming and gratitude gaining journey. When you stand before a giant buddah, step bare foot into a Chalong temple, be graced by the gentle natured elephant, meet so many humble, passionate and welcoming people, who I now take liberty in calling friends and bathe in the warm soothing sun, who wouldn't come home with a new set of priorities in life!

In my quest to see Hummingbirds Early Intervention and Education Service bloom and help families I have also seen such a wonderful improvement in dear Ruby and big sister Sophie. What joy it brings me to see a smile every day on Ruby's face and the happiness Sophie radiates from tickling and adoring her little sister. What peace it brings me knowing that I am teaching my girls that no matter each person's abilities we are all as lovely as each other and deserve nothing less. The way Sophie adores the other children in the centre and becomes so excited knowing who is in the following day so she can cuddle and play with them and teach them what she is learning at school! This is what life is about.

Yes we all make mistakes, I have made plenty and without doubt make plenty more! As Marilyn once said  “I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best.” ― Marilyn Monroe.

Now I am filled again with love and light I will continue on this journey of passion and compassion. I will continue to encourage a better world for our children who need the extra assistance in life and support the parents blessed with such an amazing role in this world. We will all burn out, lose faith, lack motivation and make mistakes.
I know that each time I make a mistake, I ponder then learn from it. I retreat, I pray, I doubt, I seek, I ask, I eat, I cry! At the end of it all I learn and move on.

" There’s a crack (or cracks) in everyone…that’s how the light of God gets in.”
― Elizabeth Gilbert, Eat, Pray, Love

Belief

As the sky parts, from grey to blue
who knew?
who would know?
from a seed..... a flower
which I knew

No matter the weather
there is always hope
there is always a glimmer
a shimmering boat

staying afloat
is the key
cherish the waves
sailing to be free

will she walk?
will she talk?
what about sit or stand?

Doesn't matter what happens
for what matters is to be sat in the boat
absorbing the rough with the ease
watching the flower bloom
through the parting trees

for a smile
.....is glimmer
.....is hope
.....is BELIEF

 

A Day in Adelaide!

As the alarm went at 3am, I reluctantly rolled out of bed and began the journey to the airport with Mum and Ruby for another fast and furious trip to Adelaide to see the wonderful Doctor of Ruby's.

The exhaustion hit me as we made our way in the dark to the airport, where I knew it was a day of chaos, waiting, sitting, queuing, learning, people glaring, Ruby getting unsettled etc etc etc! I also knew it would be well worth it.

So in a nutshell Dr Siow, who is an amazing, knowledgable and mind boggling clever man only saw improvements in how she has developed over the past four months.

When we first saw Dr Siow in September 2012 Ruby weighed approximately 9 kg, was pale, extremely gaunt looking with minimal flesh on her bones. She was in extreme pain, malnourished, no energy, fed solely via her button in her stomach and somewhat retreated in herself. Today she weighs a whopping 14kg.

I put this down to a combination of things, but ultimately it has been the supplements to kick start her digestive and immune system, to get her cells starting to absorb nutrients, ensuring the correct nutrients are given, which the body is able to digest and process correctly. I can not stress how important it has been to follow such strict, yet simple instructions! Even Ruby's paediatrician in Brisbane can not comprehend the degree in which she has improved, and encourages me to keep going! May I remind you that Ruby was not supposed to be with us a year ago! Doctors only had grim news, with no answers or proof, or suggestions.

Ruby has gained weight, with nice little rolls on her thighs and tummy now! She is now eating orally, with combinations of yummy, clean super foods, oils and supplements. She continues to sleep well, has been free from chest infections for a good while now and her body is so much warmer. She is more aware, loves tickles from her big sister Sophie, settles very well if she gets upset momentarily and is on minimal medication for pain.

I take my hat off to all my friends who work in the industry, such as Renay Hill from K.I.S.S nutrition https://www.facebook.com/kissnutritionbrisbane who has been an amazing support and teacher along the way, Dagmar Ganser, True Medicine http://truemedicine.com.au/ who has been my all round guru since 2009, Melissa Luxmoore https://www.facebook.com/#!/pages/Nourish/119456588139117 who is a GAPS (Gut and Psychology Syndrome) practitioner and understands the complexities and nutritional needs that children who have extra challenges require.

It can become extremely frustrating when this 'alternative/complimentatry' way of living gets scrutinised so often, when in fact this is where we start to fix the body and allow it the time to heal, rather than masking it with a medication or 'bandaid' until things get progressively worse. I appreciate medications serve a perpose and admire the medical profession for the passion they have, BUT IT'S NOT THE ONLY WAY OF TREATING A HEALTH ISSUE. PLEASE OPEN YOUR MIND AND THOUGHT TO THE POSSIBILITIES OUT THERE!

As always, I will continue to update this blog with how Ruby progresses and share with you her journey and how we're all 'Realising Ruby'. xx

Off to big sisters 5th birthday party!

Gorgeous girls, August 2012

September 2012

October 2012

March 2013



Sisters, almost as big as each other and looking more and more alike!



May 2013 a rainbow beaming down on Adelaide!

"Everyone wants happiness, no one wants pain, but you can't make a rainbow without a little rain.”

.....and boy has there been rain!!!!

This Too Shall Pass

Just as life seems to be cruising along at a manageable pace.... the change occurs.  Accompanied with a sinking, stomach curdling, anxiety comes the witnessing of dreaded, evil, life changing SEIZURES.

As much as I dread the trip toward the city to the red bricked building full of medical staff I knew this is what had to happen.

Up until a few years ago I knew hospitals only for the delight of bringing into the world newborn babies and fairly simple day case procedures. Until you are thrown into the system un prepared, in disbelief and utter confusion no one can explain the mind shattering,  isolating black hole you so often plummet into.

There is a residue, unseen to the human eye and an odour you do not smell which clings to you as you leave. You are often in disbelief and denial as to the events which happened in that place. At the time its a place you swear you will not be returning anytime soon, however, after time.....comes healing. You start to see it as a place of good intentions from good people, they are just confined to the rules....rules of their role....in that place.

The odour I refer to is that of sickness and pain and worry. As I walked into the brightly lit hustle and bustle of Emergency, there it was....that same old feeling brewing. That time when you step up a notch in protection of any unnecessary intrusive procedures taking place on your fragile child. 

Mothers huddle, holding themselves up behind the curtain cubicle where there little angels scream, helpless. Fathers stare, emotionless, motionless, uncertain of what to do to protect their love ones. For they can not fix it. The screams of blood being taken, catheters inserted, wheeled to X-ray, hours of waiting, endless explaining, yearning for peace and quiet. Longing for silence and calm and life as we once knew it. 

However as a veteran and seeing familiar faces and a warm welcome from doctors and nurses, faith is somewhat restored. The key is knowing and understanding the system. Understanding they are only doing their job.

Appreciating they only want to help, but need to keep a distance at the same time. There is 'keeping a distance' but then there is 'keeping a distance but with compassion'. Coming across that special one who offers a cup of tea, and if a biscuit accompanies it.....what a warm and glowing ray of light it can bring to you in that moment of darkness and disorientation. Its the simple things. 

After the storm there is calm, however the home you once knew never completely feels the same. I don't know what it is, but that seat you used to sit in, nursing your baby, or the smiles you once shared in the hustle bustle of the kitchen, that routine which was rudely encroached upon is just a distant memory, with a sadness attached. Then as you walk in, exhausted, drained, emotionless....a hearty meal left on the kitchen bench, wrapped in a cloth towel from an amazing friend  is enough to budge what was an emotionally wretched day right out the window and make way for the next moment, the next dawn.

For in the moments of absolute darkness, comes that glimmer of hope and light.

“This too shall pass.” ~Persian Sufi poets~

An April Update!

It has, again been a little while since I updated you on Ruby-star. So here goes....

Ruby has been attending Hummingbirds Early Intervention and Education Service now for just over a month. She spends the day with other children, socialising, doing sensory work, listening to songs, instructions, music and the other children laughing and playing. I believe the time at Hummingbirds has assisted with her overall mood and comfort.

Since August last year, when we commenced our new adventure to Adelaide to see the wonderful Dr James Siow Ruby has gone from pretty much continuous four hourly pain medication, being valium and morphine. She is now only requiring maybe two doses during the whole day of valium. The morphine has left the building....well almost! It's a little sad when I see it as a security blanket for Ruby and her pain!

In addition to the decrease in medication Ruby has gone from 9kg to a whopping 13.6kg! Her body is starting to process nutrients and store them correctly. She has more eye contact, and responds when being spoken to.

The best part of this April news is that she has been eating solids now for the past two weeks...yippeeeeee! She even took some juice from a sippy cup! This is AMAZING!!!! I am so very proud of my little angel and look forward to what the next few months bring. We are off to Adelaide in May to start the next step of Dr Siow's protocol.

As I have been so utterly snowed under and consumed with the setup of Hummingbirds over the past few months I recently observed myself from a new angle, when I received an offer of help from someone in particular I, in a way,  'froze' and panicked! I won't go into the whole story, but will leave you with this...

When we give cheerfully and accept gratefully, everyone is blessed.” 

― Maya Angelou

Music to my ears

After another early start and chaotic trip into the city for yet another paediatric appointment we enter the specialist suites, which seem somewhat quiet. Usually we would be greeted by a mind numbing line to the reception desk. Not today though....hmmmmm...interesting! This could be our lucky day of getting in swiftly and able to make our way home just as swiftly. Then we turn the corner and it's literally music to my ears!

 A volunteer is sitting with all the parents and children as they are absorbed in his voice and guitar. How one man can provide so much joy and peace to so many families who reluctantly have made the trip to the hospital...waiting...for yet another consultation. It honestly is enough to bring me to tears.

  “After silence, that which comes nearest to expressing the inexpressible is music.”
― Aldous Huxley

 So what is it that certain people possess to leave such a lasting impression on others? What is it that really allows someone to connect with another human being? Yes people can be pleasant and nice and helpful and kind but what is it which actually reaches through to the core of yourself? Well the past couple of months have been somewhat busy, with organised chaos, meeting after meeting, phone call after email after presentation to strangers. However it turns out that these strangers who are crossing my path have become somewhat involved in my passion and vision and mission in life. So it seems that people WILL turn up in your life when you least expect it and connect with you...to the core.

 Whilst walking through a local shopping centre, with everyday local people I was in my usual daydream, with a testing five year old, whilst pushing a pram, wondering how long I will have until Ruby decides enough is enough and to get the hell out of that place....and in the process letting all know her intentions! We stop for a moment when a gentleman starts waving and talking to Ruby. I can then see the alteration in his facial expression when he realises Ruby isn't as responsive as he expected. He moved closer, still mesmerised with Ruby. He then says out loud, whilst still focused on Ruby and her big eyes "i'd give anything to trade places with her". He had a tear in his eye as he then looked up at me. I smiled and nodded with appreciation, and he then slowly walked on by, still fixated on Ruby's angelic, innocent face. This gentleman was obviously touched to the core by a little stranger named Ruby.

 Lyrics have always been a comfort to me and resonate so many moments in my life. In the spirit of this post the following have reached out to me and made me realise a few home truths.

You've carried on so long,
You couldn't stop if you tried it.
You've built your wall so high That no one could climb it,
But I'm gonna try.
Would you let me see beneath your beautiful?
Would you let me see beneath your perfect?
Take it off now, girl, take it off now, girl I wanna see inside
Would you let me see beneath your beautiful tonight?

 For so long I have sheltered myself and my beliefs and all which is important to me...because I listen to people too much! I have always worried about what others think, what's right and wrong. However have come to ask myself what makes something right and wrong? If it is not doing harm to anyone then why should you be afraid to express yourself and all you value and live for? I too can hold valuable views and ideas.

 I have learnt that when you make room for the good in your life and what you're passionate about then things start to happen. You meet the people to help you on your journey, you start to see that things will be okay as long as you do what you are passionate about, you learn and become more confident to surround yourself with likeminded people who only strengthen and inspire you. These are the people who leave an impression in some way or another, who leave a yearning for more, who encourage you to embrace your vision and ultimately these people strike straight through to your core.

 “Look around you. Everything changes. Everything on this earth is in a continuous state of evolving, refining, improving, adapting, enhancing…changing. You were not put on this earth to remain stagnant.”
 ― Steve Maraboli

Take a leap of faith, hold on to that hope, vision and mission and you will most certainly be guided by the melody of your life. xx

Hummingbirds Early Intervention and Education Service

Well....four months after having a 'bright idea' it seems to have come to fruition! Hummingbirds Early Intervention and Education Service is up and running. We opened our doors to local families this week and already have two days a week full and the others filling up swiftly. Some families are travelling up to an hour to access our service.

To be honest I can't quite believe that it has happened! What was once a distant dream has now become a reality! Hummingbirds would not have happened without the hard work, dedication, vision and dream of my colleague and Co-Director Leanne Southon. In addition to Leanne I would like to acknowledge Rebecca Kent who has shown nothing but support, expert knowledge and again a dream to give more to our dear angels who face a few extra challenges than most. We will endeavour to keep you updated with developments and are currently working toward our next centre....which will have a very unique ambience and vibe to it.......to be continued!

 THANK YOU TO ALL who have shared in this journey, offering support, guidance, advice, coffee....coffee....late nights, loooooong days, child minding, furniture and equipment donations, dedication and just lots of love!

 Here are a few pics of Hummingbirds, Redland Bay, QLD. xx

Own Worst Enemy

So as I sit here, pondering on my lack of motivation and enthusiasm for, well anything really, I realise that I need a good slap!

What leads me to this deep crevice of a well where I feel like I am drowning in my own misery? What is it that suddenly turns off the light of the passion and enthusiasm I had not so long a go? A feeling of loneliness, of worry, of doubt, a sense of great frustration with the world around me and anger toward others who seem to advance these feelings. In fact, once I snapped out of that absolute dismal hole I hovered in, a moment of realisation.....it's not just me! Many of us share this hole. Some fall deeper, some just get stuck whilst others know they shouldn't be there and that there is a way out, but how? How do we rise above the pull of gravity which drags us down deeper and deeper? Is it from relying on others to support us and pull us out? Is it just letting 'nature' take its course and see what happens? Or could it be that we actually need to address the issue of what keeps dragging us down to the damp, dismal and quite uninviting well of nothingness?

Hmmmmm, what an interesting concept. To stop feeling worry and guilt, what an amazing feeling that would be. A wise soul recently said ' guilt equals pointless emotions. Never feel guilty for your actions. Everything happens for a reason' (M Avery-Whyte 2013). If you decide to do something, from your heart of hearts then it's all for the greater good. It's when the ego steps in and takes over that your mind starts to play havoc with your thoughts and feelings. Only too often we, human beings, think too much about what others would think. Why? Why do we constantly beat ourselves up about what others think? When the chances are they think just the same as you and given the opportunity to live the same life as you, would probably do things the same way. You can't constantly live your life for someone else or for what you think others want or believe is right. No one has the right answer. The sooner each of us realises this, the better off we would all be.

I personally believe that this is why so many of us land in the well of deep despair and sadness. 'Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.' Steve Jobs. This can be a scary and vulnerable thought to have, but we can't be true to ourselves and lead the life of happiness we deserve if we sit back, unwilling and fearing to do what our heart tells us. Although it may appear frightening and controversial perhaps, if you go with your inner voice, live your passion and follow your dreams then it will all work out, and will be a domino effect. If you continually lead your life in hope that you are making others happy, then that won't do any good. Firstly you are not filling your own life with happiness and joy, and if you don't have that then how can others radiate off of you? To demonstrate your love for yourself and honour to yourself, this is the greatest gift for anyone surrounding you, especially children.

Things do not always turn out the way you thought they would, or the way you believe they should. This is hard enough to understand let alone to act upon. However something I have recently learned is that I have no control over what happens in my life. All I can do is honour each situation and be true to myself by continuing along with my personal beliefs and not questioning myself. 'One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon – instead of enjoying the roses blooming outside our windows today.' as Dale Carnegie quotes. In essence, I have discovered, and continue to discover that I should count my blessings each day. For the things which have occurred, which are out of my control and no longer worth the constant fight or anguish I must let them go. I must learn to just accept that things are the way they are for a reason and to let the past go. To not sit dormant, wasting each day convincing myself it's the right thing to do...for everyone else.....however I must just be honest to my inner self and honour my dreams and vision and what I want for my life. 'If you are not doing what you love, you are wasting your time', Billy Joel.

It's easy for me to slip into a state of reminiscence about my past, the happy times I once had, when things were simple, care free and easy. What use is that though really? Of course the thoughts are always there, however the time is now. Now is the time to do what we want, otherwise we will be in this same situation, looking back on what we had or could have had but never making the most of what we have in this moment. So I urge anyone hovering or deeply immersed in the well of a melancholy state to please seek that glimmer of hope and happiness. To understand it is a choice, and no-ones but yours. You are the person to get yourself out of that mundane echo of despair and pull yourself out in to the iridescent light and wonder of your own life. You need to own your life, not rely on others to  lead you where you want to go.


I will conclude with the wise words from a wise playwright  'go girl, seek happy nights to happy days'.  William Shakespear.

A picture says it all!

A star is born, 2nd July 2009, a few hurdles along the way, but we're getting there! Love, belief, a vision, strength, courage and persistence is all it takes!

My angel x

Very cheeky!

My happy bub xx

Getting so strong

and inquisitive!

Let the steroids begin :-(

Water baby x

My first Christmas

Cuddles with Mummy xx

My first birthday xx

2011 trip to New Zealand to see Dr Paul xx

Sisterly love xx

Yellow, black and blue arm from triple daily blood tests :-(

Big sister loves you xx

Mummy's birthday xx

2nd birthday in hospital xx

Tough times xx

Yet another hospital stay, more prodding, anaesthetics and a stomach PEG x

Water therapy with Miss Janet and Renay, my support worker (AKA B-Nay!)

My 3rd Birthday xx

Sophie's 5th Barbie Birthday! xx

Flat out at Physio!

Miss Meliss, keeps on believing xx

In my 'little room' at playgroup xx

Aug 2012, Adelaide to see Dr Siow

Healing time xx

Miss Meliss won't give up xx

Miss Meliss is still on my case! xx

Happy munchkin in the car xx

Big girl at playgroup xx

Big smiles for Mummy (November 2012) xx