"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
Small Sisters
Sisters
Tuesday, December 13, 2011
Wednesday, October 12, 2011
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!
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!
Friday, July 29, 2011
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
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
Sunday, May 29, 2011
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
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
Tuesday, February 15, 2011
January Joy
So it's 2011 and what a year its been so far!
We have been the receivers of such love and support, especially from Miss Janet, craniosacral therapist/massage therapist/ all round darn special person, Miss Jenn, Chiropractic goddess, Peter and Barb, amazing acupuncturists and Dr Paul, who is probably the most knowledgeable, kind, understanding, skillful and in my eyes a true miracle maker Osteopath oh and don't forget Thomas the therapy cat!!!!
Dr Paul flew from New Zealand to assist Miss Janet treat Ruby. An intensive weekend full of tea, coffee, special bickies, osteopathic and cranio sacral healing, treatment, love and laughter. The whole family was present and we all received a treatment from Dr Paul- ******A M A Z I N G *****
Since the weekends treatment and new homeopathic drops Ruby is sooooo much more comfortable and progressing swiftly. The sucking reflex has improved, colic improved, bowel pain improved, we can drive more than 15 minutes without crying- woo hoo! Ruby is generally much happier and is beginning to blossom into such a beautiful little girl.
Over and out for now.......
We have been the receivers of such love and support, especially from Miss Janet, craniosacral therapist/massage therapist/ all round darn special person, Miss Jenn, Chiropractic goddess, Peter and Barb, amazing acupuncturists and Dr Paul, who is probably the most knowledgeable, kind, understanding, skillful and in my eyes a true miracle maker Osteopath oh and don't forget Thomas the therapy cat!!!!
Dr Paul flew from New Zealand to assist Miss Janet treat Ruby. An intensive weekend full of tea, coffee, special bickies, osteopathic and cranio sacral healing, treatment, love and laughter. The whole family was present and we all received a treatment from Dr Paul- ******A M A Z I N G *****
Since the weekends treatment and new homeopathic drops Ruby is sooooo much more comfortable and progressing swiftly. The sucking reflex has improved, colic improved, bowel pain improved, we can drive more than 15 minutes without crying- woo hoo! Ruby is generally much happier and is beginning to blossom into such a beautiful little girl.
Over and out for now.......
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