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~