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