Realising Ruby: A Vision in the Midst of Chaos

I would like to share a short story I have written. This is for anyone interested in the journey of Ruby, for anyone going through similar times with a child with unique needs, and for anyone who is a little bit 'stuck' in their way of life. Hopefully this may give a new perspective on things.

Realising Ruby: A Vision in the Midst of Chaos.

There is one question a mother should never have to face, ever. "Do you wish to sign a Do Not Resuscitate form?" As this replays in my head over and over it's almost impossible not to just give up hope and lose all faith you may once have had. It appears that I may have just beaten the odds and come out on the other side. This is the story of my Ruby.

Ruby Grace, or as she likes to be known, RubyStar, soared into this world with such purity, beauty and grace. July second two thousand and nine was the start of one truly amazing and inspirational journey by far. This is the story of a little girl, with big eyes, who has made an impact on so many and will always be known as Little Big Eye's, a shining star, lighting up the sky of many. Ruby continues to be my teacher, in the course of finding my vision. Everyone has a "Ruby" at some point in his or her life, you just have to be open to realise them, just like I have realised Ruby.

Realising Ruby and understanding that she is perfect in every way is a gift. Through this awareness of how perfect and precious she is I have been able to see Ruby as nothing other than that, the most powerful gem in the universe. We, Ruby and I, encourage you to see past what appears to your naked eye, and instead see the abilities, the possibilities, the grace, the beauty, hope and open up your heart, mind and soul to how perfect Ruby is. Patience and an open heart is all that is needed to understand Ruby and her story. Although she does not have a vocal voice, she speaks far more words than many.
　
From then until now is a story by far, but seems to have flown like a high speed car,
With ten fingers and ten toes, a pouty mouth and cute button nose,
What a miracle I was, like any baby born, feed me, cuddle me, ahhhh yawn,
I love my sleep, playtime and friends, but who knew this was soon to end.

I was getting so strong and developing well,
until something happened and went off like a bell.
At nine weeks old I began to feel ill,
When asking for help I was handed a pill.

Excruciating pain ran through my spine,
If only we knew what had happened at the time,
From the top of my head to the tips of my toes,
I wish someone helped with my mummy's woes.

Doctor here, nurse there,
specialist appointments everywhere,
Colic or reflux, food allergy or intolerance?,
Are doctors really the experts? Please excuse my ignorance!

At sixteen weeks nothing improved,
In fact I was in a worse kind of mood.
Non-stop screaming and pain oh so sore,
It's hard to imagine what's through the next door.

Rushed to hospital, bright lights everywhere,
What's going on? We had absolutely no idea.
Then the time came where blue turned to grey,
Please oh please would it all go away.

Diagnosed with spasm and seizure activity,
It was all too unthinkable for my mummy and daddy.
What did this mean, where is our future now?
So many questions like why, when and how.

The next few months are quite a blur,
Too much to mention, or remembering where we once were.
All I can say is what a journey it's been,
But this world is a place with lots to be seen.

No matter my diagnosis,
or suggested prognosis.
I know now for certain,
I'm opening this curtain.

No more darkness or sadness or tears on board,
It's now time to be positive and cut that cord!
As human beings we must learn to just BE,
I will now start the story of Realising Ruby.

I take liberty to the fact that I am Ruby's mother and believe I have the right to express how she has felt over the months. I am her voice, her advocate, her carer, believer, apprentice, friend, teacher, nurse and overall specialist. Someone once said to me 'you are Ruby's specialist and the doctors are your helpers'. This is so very true. Doctors do not know everything and unfortunately sometimes lack the necessary communication skills to learn about and assist their patients. I have met far too many parents, in such a short space of time, living in fear, uncertainty and frustration. I believe it's imperative for a parent to have a vision, for themselves and for their child, no matter what their circumstances are. Locating your vision will open up so many doors, doors to knowledge, to hope and possibilities. For without these the world can be a very dark place.

From the eighth floor of the children's hospital a lady, shining from the streets below took my attention away from the solitude of the clinical hospital room. I knew I was meant to take a journey down to the street to buy a gossip filled magazine from the newsagents she stood in front of. In my state of delirium, worry and loneliness I made my way in the lift down to the street. I stood at the pedestrian crossing, just waiting, feeling empty and confused. I crossed the street, bought the magazine which was in an effort to fill a void in that moment of my life. When walking to the crossing again, waiting to take my steps back to the energy sucking rooms of the hospital, the lady, in a shining jacket, grabbed hold of me. Not physically, but somehow in her mere presence she pulled me over and began to chat to me. She asked questions of Ruby and why she was there. I said I wasn't even sure, everything was a blur, according to the specialist Ruby has epilepsy as part of an undiagnosed neurological condition, which for me was the end of the world. For in the few moments I spent with this lady, I did not get her name, nor see ever again, it felt like I had known her an eternity. She told me it would be okay and that doctors don't know everything. She explained that she had epilepsy and so do many others, it's really nothing to pour my energy into. I said goodbye, felt my body just melt with reassurance and walked back to that room free from the doubt I once had ten minutes a go. I placed the Big Issue magazine she was selling next to my bed and just let it be. For the majority of others she was a homeless nobody, to me she was a shining vision of an angel.

Angels come in all shapes, sizes, moments, thoughts and dreams. Prior to my Little Big Eyes soaring into my life with such grace and beauty I was so completely unaware of this concept. An angel is suggested to be a spiritual being, believed to act as a messenger or act of god. Well this was never a topic of discussion in the office lunchroom, of the life i once took for granted, nor amongst friends or family. So why was I so intrigued by this concept now? When pain, grief and loss hits you, you either stay down in the depths of misery or you reach out and learn as much as you can. So when therapists and friends began to appear in the lives of Ruby and me it was immediately obvious that these were our angels. Angels who were offering help, guidance, love, caring, reasoning, hope, support and sanity. These were not in my dreams or delirious visions of white wings and long floating gowns, but they were here, on earth, offering their skills and knowledge to help my little girl and me. I don't care what anyone else says, but these are my angels and always will be. They saved me. They keep me going and Ruby certainly knows that too. There is such calmness in the room, tranquillity and peace. This is what we all need in our lives at some point or another. Time to reconnect to what our heart and soul craves for. The craving is generally to grasp hold of your ultimate vision and believe in it one hundred and ten percent. Do not stop until you find your tranquillity and peace. For it is only then that you know that you are going to be okay.

Early two thousand and ten was just the start of what was to be a life changing, soul searching, spirit lifting journey. A journey of pain, sadness, grief, disbelief, anger but above all strength and determination. As I walked into the clinic, embedded in the city streets I felt uncomfortable immediately. What is with these clinics that have no customer parking? Why do they make it so difficult for people to attend an already nerve wrenching appointment, with no ease whatsoever to park their vehicle? The bright lights, cold air-conditioning and what seemed hostile greeting from the receptionist did not strengthen my faith in this appointment by any means. Mummy tiger stepped up a notch, just a little, and placed a bubble of protection around my little big eyes. She should not have to experience this, no one should. As we waited, and waited we went from one consult room, to answer questions which we should have just recorded to replay by this stage, back to the waiting room, to wait for the ophthalmologist. The next stage was a moment which I will never forget, the words 'she may never see' replayed over and over in my head. At first I was in shock, then angry, then confused, then absolutely shattered. What gave the right for someone, who has never met Ruby before and looked into her eyes for less than ten seconds, to say that to a parent? We were sent out of the room to pay our fees and leave. To say that this was a pivotal moment in the course of my vision searching was an understatement. What I should have said was that it was the small-minded people, such as herself who cannot see. My little big eyes has the ability to see far more than anyone I know, as no one has had the ability to touch so many and open up the world to so many people in such a short space of time. RubyStar could teach this lady the ability to see!

No one can deny the bond that mother and daughter share. Sometimes it takes a lifetime to learn and appreciate this, but for Ruby, well she wanted to teach people a lesson far earlier than most. In the short space of thirty three months the lives of so many have been completely shaken up, turned upside down, hit rock bottom, bounced up again and spun three hundred and sixty degrees. For some, it has been an experience and a half and they chose to ride the high speed current, embracing the journey. For the others, unfortunately they are in a place I like to call Angry Limbo. Angry Limbo is not a very pleasant place to stay for long periods of time and can make it extremely painful and almost impossible to see the grace of the world and what can be offered to them. With the term 'Vision' appearing again and again in our daily lives, particularly toward parents of a child with specific needs, it can create havoc and leave the feeling of emptiness and confusion. Vision, as most know it, is an experience of seeing. The ability to see what's in front of you, see colours, shapes, drive a car, watch a movie, see a smile, see a tear, see the ocean and the moon shine so bright. It gets to a point where, for most, this is taken for granted. Then it comes to the question, which is repeatedly put to us...But what is your vision?

'Vision', as Jonathan Swift once said, ' is the art of seeing the impossible'. To those who have been blessed with the inner guidance and wisdom, this comes somewhat easier than to the others still stuck in Angry Limbo. So, how do you get from the dark, miserable, mundane place to the idyllic lands of hope, faith and grace and live your life with complete and utter peace? Well from the journey I have travelled along side and under the angelic wings of RubyStar I believe I have knowledge and teachings to share with others to achieve your own vision, enabling you to move from angry limbo to peace.

As I entered the grand doors of the Golden Mosque, Brunei on September eleventh two thousand and eleven I had a vision pass before me. Here I was, just me myself and I, halfway across the world with time, time to just be. Time to be me. Entering the grand prayer room the rather humorous, but incredibly humble and proud tour guide instructed our small group to clear our thoughts and minds in order to make a prayer for ourselves. With this, we each stood there, still, and just embraced the moment. In this moment another vision entered my mind, body and spirit. The people of Brunei are some of the most happy and content people of the world. This does not come from monetary wealth or possessions, but rather from the vision of their people, community and country as an 'Abode of Peace'. As I left the beautiful Brunei I take such wisdom and wealth with me that money can never buy.

Continuing with the idea of a vision, it is only, as I believe, through learning, teachings and experiences that we start to trust ourselves. Trust our inner thoughts, our hearts and gut instinct. This is intuition. Intuition is to understand something immediately without the need for conscious reasoning. To hear this word is quite confronting if you don't fully understand it, and to understand it you need to understand yourself and just trust yourself and your own being. For me, it has taken a thirty-three month old little girl, with big eyes, to teach me the art of trusting my intuition and hold on to my vision with great passion. Intuition and vision work hand in hand. 'If you limit your choices to what only seems possible or reasonable you disconnect yourself from what you truly want and disconnect yourself from what you need, and all that is left is compromise', as Robert Fritz put it. So in order to grasp hold of that long yearned for vision you need to learn to trust your intuition and dare to believe. This concept will apply to yourself as well as your children and family. If you hold onto your own vision filled with faith and hope then things become easier in your daily life and it will only illuminate the lives of others around you and assist them to start their own journey to enlightenment and discover their own vision...in the midst of chaos.

Dare to see, dare to believe and dare to just be. X

Food for thought...and soul!

        

It has been a little while since I updated Ruby's blog, as i've been trying to gather my thoughts as best I can. With so much happening each day it's often difficult to work out what developments there have been, changes etc...if any!

OF COURSE THERE HAVE BEEN DEVELOPMENTS! This IS Rubystar we're talking about. Recently a top paediatrician working on the RubyStar team said the following "Ruby is our medical conundrum"! This did make me chuckle. It just goes to show that no matter how many tests, medical journals, 'top doctors', medications etc are involved, doctors don't have the answers! So.....goes to show that there is SO much more to the human body, mind and spirit than we can see or understand.

I had the opportunity to go away for a few days to Stanthorpe, home of the delicious apple and grape...and plenty of vino of course! Five amazing, dedicated and passionate women, also mothers, went away together for a well deserved break from their precious children to gather thoughts, energy, motivation, friendships and food for the soul! I did also manage to indulge a little in the local retail outlets! Ooopsie!

During this weekend away I encountered a number of valuable 'reflections' on life! When out to lunch at The QLD College of Wine and Tourism, enjoying an absolutely scrumptious lunch and wine tasting the ladies were debating whether to have desert there, or at The Bramble Patch, another delightful spot for sumptuous treats and....of course, wine! Then....Gemma, the host came up with a brilliant idea "you are allowed two deserts"!! WOW what a life changing experience that was! That comment in itself made me realise how stuck we are in 'what society frowns upon'. Why the heck shouldn't we be allowed two deserts if we feel like two deserts!...Not every day of course, but with the job that we have, day in, day out....for goodness sake we deserve to indulge a little! Just so you know...I went for the extra glass or two of wine rather than desert!

After gorgeous crisp sunny days the sun would go down so gracefully with the picturesque surroundings, to allow for the blaze of the roaring fire to fill the extremely large family cottage with 'that ambience'. That ambience being warmth, comfort, healing and nurture. There is something about a log fire, with everyone enjoying a book, sharing photo's and conversation, and of course a hearty glass of soul warming red wine! This was pure bliss, in its most simplistic form. As benjamin Franklin stated "A house is not a home unless it contains food and fire for the mind as well as body"

After recharging the spirit and soul we made our way home. With new knowledge, new friends and for me, another urgency to feed MY soul full of love, laughter and life- for Ruby's sake.  It is in fact the other way around. Ruby is the one who is feeding my passion and hunger for knowledge, healing, happiness and love. She is in fact, perfect just the way she is. xx

"and what, Socrates, is the food of the soul? Surely, I said, knowledge is the food of the soul" Plato.

              

A time to Surrender

Surrender: "the relinquishment of one's own will to a higher power"

So....time continues to run away from me full speed ahead. In the last post I mentioned my need to have time out as I was close to 'crashing and burning''. WELL....bahahahahaha...guess what, the universe got the better of me and I well and truly crashed and burned baby!

I now realise that this was my time to 'Surrender' .

At this time I certainly felt like I had given up, lost all energy, inspiration, motivation and any other 'woo- hoo' word you can think of!

HOWEVER.....mwahahahahahaha (slightly cunning laugh!) I AM BACK! Thanks to supportive family, amazing and inspiring friends who gave me the kick up the bum I needed I am well and truly back on the high speed road raring to go!

So after actually letting go and allowing other people to take up some of the slack I've been carrying for some time now the universe has certainly started to deliver TO ME! Pamper packs and massages literally delivered to my door by an angel in pink (http://www.pinkpamperpacks.com/) and two intricately decorated boxes full of finely wrapped thoughtful gifts with messages for each day, thanks to the local mothers union group.

Then new therapists appeared and OMG......they are literally a god send.

I just wanted to update you all. Ruby is feeling her absolute best she has for some time now and I am on top of the world! It's true...when you hit rock bottom there is only one way to go....UP UP UP!

On that note I shall farewell you until next time!

"Rock bottom is good solid ground, and a dead end street is just a place to turn around."

Determination

"Every worthwhile accomplishment, big or little, has its stages of drudgery and triumph; a beginning, a struggle and a victory." Ghandi
So I must admit that times have certainly been testing me lately. I thought I had the strength and determination of any strong willed and motivated individual, but seems I am being pushed that bit further...and further....

So we're up to approx 24 months of questioning, screaming, fighting, frustration, anger and excrutiating fatigue, with STILL no answers.

Just when things start to get a little better with improvement and teeny tiny steps forward, we're again handed one giant slap in the face and take ten steps back. How many visits to the hospital and specialists does one need to endure??

The latter part of 2011 has certainly been a rollercoaster. Including a trip to the UK, ALONE! What a refreshing and energising two weeks of my life that was. Firstly I recall having the ability to actually think for myself, think clearly, think without influence or criticism. The visit to the Golden Mosque, Brunei was the first stop where our small group of three were told to walk into the prayer room, clear our minds and ask for clarity and answers. In that moment I felt a large, deep breath of energy and openess enter my soul. My 12 hours in Brunei achieved for me what some people may wait a lifetime for.

During my fleeting visit to the UK I spent it catching up with dear friends, suprising a number of them, proudly standing by my best friend as she married her sweetheart and BIG BELLY LAUGHS in old London town!

To some this may appear selfish and extravagant when I have responsibilities and little funds back in Australia, but without it I am certain I would have come close to crashing and burning.

With several hospital visits, specialist appointments, new doctors and therapists I have all reason for a positive 2012. Surely it's time to bring peace to my dear Ruby and family and allow her to grow and blossom into that bright shining star we know she is.

To end this post I will finish with....

"What this power is I cannot say; all I know is that it exists and it becomes available only when a man is in that state of mind in which he knows exactly what he wants and is fully determined not to quit until he finds it." Alexander Graham Bell

Something to ponder over!.......Compassion

Recently I have been exposed to the term Compassion. This has been in relation to how I live my life in general. Initially the word meant to me....to have understanding, to show and express appreciation. It's kind of funny that the term keeps being exposed to me by different people and communication methods such as emails and workshops. Hmmmmmmm I think the universe may be trying to grab my undivided attention!

So according to sources the term can mean:

'a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering'

'cornerstone of greater social interconnection and humanism — foundational to the highest principles in philosophy, society, and personhood'

Wouldn't it be just dandy if every human being could live with compassion!

Recently on a weekend away with families who have children with different and special needs it occured to me that all these people have compassion...so why can't everyone? Is it because we have been the ones who have been blessed with a child who requires our undivided attention, love and support? I tell you...to see SO much unconditional love in one room was AMAZING.

We spoke about feeling isoltaed and segregated from our community and that other people just have no understanding of our childs ability. They may just see a wheelchair, nasogastric tube, oxygen tank, supportive footwear etc etc and assume that they are SO MUCH MORE DIFFERENT to anyone else.

Arghhhhh! I feel like screaming at times.

Normal? What's normal? Your normal or mine?

If only we could all live with compassion...what a wonderful world it would be!

Just a thought!

Christmas in July!

So, another month has almost passed us by and what a month July has been.

The month did actually start in the Penthouse of the Mater Childrens Hospital, Brisbane. Never a particularly happy place of mine but this time things changed.

After, reluctantly,  making the decision to try a new drug on Ruby to make her more comfortable and put on some weight it seemed she had other ideas! NOT HAPPY JAN! Ruby decided that this was NOT the drug for her and made no attempt to hide the fact. With hours of screaming, off feeding, rigid and fever we were off to the Emergency department. This time I was equipped with a new frame of mind and belief in mine and Ruby's rights. I knew I could question the nurses and doctors. I knew I could object to any drugs and I knew I could challenge the medical staff- those are our rights.

So after seeing many doctors, who were absolutely THE NICEST we have seen by far. They showed compassion and truly listened to the story so far and what the main issues are. These being Ruby's gut pain. It's only taken 18 months for someone to actually listen to this and put the 'neurological' symptoms to one side.

The lovely doctors, Vinita and Sebastian continued to visit Ruby and I each day to check in on us and follow up on the story. The nine days that Ruby and I spent in hospital were quite life changing!

Ruby celebrated her second birthday in hospital with some special friends and family. With presents piling everywhere from lovely nurses and doctors- it made us realise how special Ruby is to everyone in her life.

With the right meds to treat the reflux and gut issues Ruby started to really come out of herself and has become so much happier. We even had giggles in hospital- this might seem a given for most babies but for Ruby we've hardly had any smiles or giggles for over 18 months- can you imagine 18 months of screaming??!!!!

So with only a few days left of July we have gone nearly a whole week without crying- YIPPEEEE!!! Ruby is enjoying her food much more and LOVES going for walks with me- YAY! I haven't been able to have her in a pram for more than 15 mins previously without crying. We're going for hour plus walks and she's taking it all in.

So I am finally getting people to actually listen to me- the mother! I tell you- if there's one thing i've learnt so far that's to not give up- NEVER give up on what you believe in. In times of doubt and days of depression- just take a moment to reconnect with yourself and what you truly believe in. NEVER LET ANYONE TELL YOU OTHERWISE.

We're on the upward hill now- get ready for the next chapter!

Much love Mummy and Rubestar xxxx

New Zealand...New Dreamland!

What an AMAZING time we had in the land so close, but felt like a dream land away! NEW ZEALAND. April took us on the plane, which was Sophies first 'hairoplane' trip! She had an absolute ball.

So in addition to the beautiful Hamilton Gardens, Zoo, Glow worms, Bubbling mud, hot springs, breathtaking countryside, interactive museum, beautiful people and awww inspiring art gallery Ruby received daily treatments from the ever so famous Dr Paul and Dr Charlie (Osteopaths).

We were priviledged to have the also famous Miss Janet travel with us, and learn the techniques to continue back home down town Cleveland!!

The trip was well overdue, and definitely offered RnR and lots of fun!

Ruby continues to improve day by day, and even a recent trip to the ever so 'cringeworthy' (referring to the whole medical scene) specialists rooms, saw me walk out with my head held high and for once PROUD AND CERTAIN that the treatment I have chosen for Ruby is the way to go....believe me it's taken a while to get to this point.

In addition to this a visit to the absolutely best naturopath, Dagmar Ganser (True Medicine) reinforced my belief that I am becoming a stronger and much wiser person. None of which would have happened without the challenges I have been faced with over the past few years.

Thank you to all those who have had faith and believed in me and what I do for my family. I am truly grateful. xx