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.