Goodbye2016

A prelude to Christmas mood, this was a Welcome Back Bow that I tied up on the rear deck for my son's return from India.

2016 has been divided in two races: 

1- Preparing the Indian trip for Oscar - this included fitness preparation (walking camp in Woodford), financial preparation (Subway job), fundraising (school sports canteens), finding the right gear (thermal inner liners), Indian visa interview (was your grand father Pakistani?) ...

and finally the day came when, at the age of 15, he was able to go to the Himalayas with some of his best friends, a school teacher and a very experimented tour leader able to handle 28 teenagers in rugged areas, torn by upset stomach, rough jeep and bus mountain rides, with night temperatures below 0 Celsius,

Well worth it though....

The trip ended with a visit of the Taj Mahal, jewel of Mogul architecture. I remember for ever this exquisite second when, at 23 as a solo-when-it-suited-me traveller, I glanced through this very door, and it all came at once, the sheer wonder ... 

I remember thinking : makes you proud to be a human.

And boys will be boys ... chatting with seat-number-people with his mates randomly in the plane ...

2- Finding a cure for Josie

This was by far the hardest race ... and it is not sure we'll win that one at all. On the 20th of December, as we parted from her neurosurgeon, he said what you never wish to hear from your surgeon: 'now, only a miracle ... we have tried everything' and when we gave him a small present as a token of appreciation for all the work he did for her, for Christmas, he said: 'how is this going to make me feel now' ... yes, he had tried very hard ...

and so did we... I ended up reading neuroscience papers at 3am when I could not sleep (about 50 of them?), coercing Josie's friend to give me her password to access to the UQ library (and she did), I copied complex imaging files to send to the US for an expert opinion with the help of a geek programmer friend and his wife running to JB HiFi to get the CDs and working out media, compatibility and hierarchical issues. When all was ready, all I could find for the CD was this pink case - looking like a lunch box (I deleted confidential info with pink ribbon) - and I thought,

'what the hell, at least, it will stand out!'

And it did, a few weeks after, we got a much anticipated Skype interview with a subject expert neurosurgeon, Director of Research of the Chiari Institute in New York, where the still controversial link between hypermobility and Chiari I has been first established a few years ago, with hypermobility being one of the possible causes of the Chiari malformation. The interview was scheduled at 2:00am and after he excused himself for an emergency surgery, we ended up doing it 4 hours later. He proposed a radical surgical solution that would lessen the pain dramatically if all went well, being sure at 97% of his diagnostic. He also joked that hypermobility is what takes some people to the Olympics, but that it is bad news when it is in the join between the spine and the skull; but in view of the latest imaging, and after much brainstorming among the neurosurgeons in Australia, it has been prudently decided that we mustn't seek further surgery since, without thinking only about the high surgical risk to her life and irreversible side effects, while there is no doubt she suffers from hypermobility, there no instability. 

We also had to find a specialist EDS-physio, an holistic physio, a pain management specialist, a rheumatologist, ophthalmologist, gastroenterologist, neuropsychologist, pain psychologist, former high school counsellor for comfort and guidance, you name them! ... the only one who is optimistic is the rheumatologist who sees her - against all odd - pursuing her dream of becoming a nurse one day. 

I would like to believe him.

This last month has been encouraging, we see some improvement on last year when we were in emergency twice a week, and when we spent New Year's Eve watching the fireworks from the hospital roof. We now know that she can survive excruciating pain, there are a few hours of curfew here and there that we greatly appreciate and enjoy, pain killers seem to work better, we understand a bit more about pain triggers - minimising movements and exertion - which is hard to achieve when you just turned 20 and want to live!

the strict physio regime for the last six months and her incredible resilience seem to pay off. 

We managed to spend a nice Christmas eve with a few of her closest friends, and on the 25th, I even got a 'flamingo nighty' hand made by my daughter with a 'J' threaded in the back for the exquisite, limited edition.

I also got a very unexpected and much appreciated gift from my son, an iron-cat he carried back from India, supposedly an antique, he said. I keep it next to me and my computer. 

My son explained to my husband that one of his two presents had been kept by customs :) - imagine Christmas before Customs.

The beauty in such ordeal is that you find out who you can rely upon, and it is not always who you would have thought, and not necessarily the closest to you, but this warmth, this deep sense of connexion that enables some of us think beyond self, is what keeps you going in such circumstances. 

For example, one of my colleague translated a news article on the latest imaging breakthrough in Japan in the hope it might help. A friend took me for a masala-dosa at a local Indian corner store, a special moment :) for comfort and good laughs, some friends are just there, but I feel their presence as pillars, some have sent loving parcels during the difficult moments, some prayed, even though I am not a religious person and they knew it, but this was the utmost gift from them, I could at least understand that. One said that if his prayers were not exhausted, he would stop believing in God, even though he is a highly ranked religious person, because he could not understand why God would let that happen to me. Fortunately, I did not make him lose his religion so far, and I am forever humbled by his incredible sense of empathy, and I like to believe that all this human warmth, good will and Josie's strength has something to do with the mild improvement that no one understands much more than the problem itself.

Last achievement of the year: while I was passing Archerfield amateur pilot airport on my way to a car repair job, I inquired about flying lessons for my son, and before you knew it, he was flying one of these with his instructor. This would not have never happened to him if we had not all been stranded during the holidays for the last two years.  I am told that he can fly solo next time after he has his medical check up done. He may end up with a recreational pilot license that will enable him to fly as far as Moreton Island, but I'll still have to drive him to the airport!

Good Bye 2016, I will not miss you, 

let's hope the war in Syria is over soon

let's hope the works of the good willing will prevail over the work of those who can't see beyond self

'Don't be an object but a subject of your time'

Happy New Year 2017 to all!

Supermoon, 14 NOV 16 Brisbane 17h51 AEST

About Bottling up

I have to write something on the subject because three of the closest people around me have lately been doing exactly this 'Bottling Up' Pain and many other feelings in the process.

Why? 

What do they say about it? ... 

1) I don't want people to see me like that

2) I think that ultimately, I am the only one who will be able to fix what causes the pain

3) Nothing, one said nothing.

As I was sensing all that ---- because they WON'T say anything themselves, so you have to SENSE!!!! (sigh), I realised that this is exactly what I had just been doing to a lesser extend since my daughter had been unwell (last year): bottle up as well 

Looking after someone who needs close and constant care is already isolating, but I think I have made it worse by not talking and deleting half of my Facebook friends 'so that they don't ask me questions', so that we can 'keep our worlds apart', partly to avoid being hurt myself, and partly in order not to hurt them. 

With pain, feelings do sharpen, and if someone says something wrong, it hurts ten times more than when all is well, and you don't want to risk saying something hurting to them either.

What I learned this week is that when one of them 'kind of' reached out eventually, it had a very positive effect on me. I felt joy at eventually getting a little joke from this person and after that, I self reflected about what I had been doing myself to myself and others. I realised how much you can hurt others by shutting them out, by making your friends feel inadequate, as this person had, as I had. 

This unexpected wave of warmth coming out of mutual trust reached out my sharpened feelings, but this time, the 'sharpening' was not against me, it was working FOR me. It opened up my OTHER feelings, the positive ones, I was opening to the world, and I managed to sleep better that night. 

I felt so positive that it is the first time I write again this year, which for me, is a healthy sign. 

So, if this was good for me, surely, it must be good for them. Please my friends, open up, let the bats come out, let the steam come out as it comes in, you don't want to end up like a pressure cooker, because the steam will be much harder to contain then. 

There is a world out there waiting, life reality is harsh from time to time, our world is chaotic, unpredictable. Let's not be hard on ourselves: it is no one's fault.
Harshness to self or others is a form of violence. 

It is an illusion to think that we can control everything - we can control a bit but less than we think. Thinking we can control things is an IDEA (not far from the word 'ideal'). An idea or 'how things should be' is a very human thing about trying to make sense of the world, to create a simplified 'order' when, in reality, the FACTS of life cannot be ordered so easily, if at all.
We cling to our ideas so badly that we often fail to admit reality, even to ourselves ...
we create our own delusional inner world.

There is no order about what is in store for us, and no, we don't necessarily deserve what happens to us:
IT IS IN BIG PART RANDOM,
often motivated by facts that we cannot control.

Thank you for being there, for being my friends, and remember that you will be loved by me, not for your great worldly achievements,
but for being a truthful and sincere person.

Happy New Year 2016

My 2016 mobile phone screensaver :)!

Happy New Year

This year, I will not be running on Lollipop, but on Marshmallow (Android 6.0) on my Nexus 5X, and here is my 2016 screen saver: my daughter Josie's foot in a Wonder Woman thong! ... the road is going to be tough ... but here we come 2016!

My 2015 in Review

Well, the year has been dominated by hospital stays ...

..and random acts of violence by disenfranchised and radicalized souls in Paris.

Enough imagery has been around the subject. Intolerance is not about belief, it is about power. 

It is about abuse of power.

There has been delightful moments as well .. Oscar releasing a koala in the wild in St Bees Island, Queensland, in May, while on a research trip with his dad ...

 and being invited to co-fly the plane on the way to the Island :)

'Maman, this is the best day of my life', he texted me'

A bit of extravaganza for my birthday in June : I was reunited with invaluable friends for a week in a house that looked like a trendy retreat temple :) with some very creative stained glasses in some of the bedrooms, 50m from the beach in Byron Bay, surrounded by two wooden decks with plenty of space for all - meditation in a tent at a backpacking place next door a few times :), running with lit up balloons at night on the beach, going crazy with Mimi-closet burlesque dress ups in a farm nearby, cooking delightful meals all together with the kids in the evening, Australian floral essences massages, a memorable meal at the nearby Fig Tree Restaurant, a favourite of mine.

And a kangaroo family in the garden here for the long run, so it seems ?

I am not going to be very eloquent.
At the moment, I am just hoping for better time as I am concentrating very heavily on my daughter's health and well-being, after four trips to emergency services in the last three weeks.
We are now organizing a trip to Sydney for the end of January to have access to special imaging equipment (one machine of this kind in Australia), and an subject expert specialist visit on recommendation of her surgeon.

We were extremely appreciative of being able to spend Christmas with her at home rather than in the hospital. We even saw red Christmas tinsel garland drawing heart rate curve displayed on the wall of emergency ward this year: while there seem to be no boundaries to humour, this shows how close to Christmas we were then.

As a result, we made Christmas day extra special this year. Each and every one of us present (a very small committee) made a special dish: a special gingerbread house, a bûche de Noêl decorated with cherries, a sophisticated filling for the five-K turkey, scallops feuilletés with home made chicken stock among other secret ingredients, and rosemary parsnips and potatoes.

We all enjoyed our presents in the morning: our presents from her to us were even sealed with blue wax and a «J» (nice touch :).

A few days ago, I got excellent news from work that should make the next few months much easier for me, and the prospect of new exciting management developments that are coming as a breeze of fresh air to me (sadly, I lost many friends at work who went to seek jobs elsewhere this year).

I hope this wave of good news is going to continue blowing in 2016 ... if it does, there will be HEAPS OF CATCHING UP TO DO!

Spotted from the sky!

My husband and my son were spotted from a patrol helicopter on Thursday the 29th of September while they were canoeing off Byron Bay and encountered two whales - a mother and a calf

Here is the patrol report

As I scrolled down their patrol reports, here's what I found: the black dot on the bottom left is a shark just behind the surf line

This picture was taken a day or two later after the canoe trip. It may not be the same mother and calf as it is a whale migration area, but what a beautiful sight!

My last day working with the Refugees' and the New migrants' kids

My Girafe :)!

My Farewell Picture from Refugee Kids

Today was a sad day: it was my last day working at that Special School (2 hours a week for one year). As some people I know would say: don't feel sorry it is over, just be happy it happened ... well, I suppose so :( I will miss the kids' incredible WILL to learn, their energy, the beautiful African smiles and clothe colours & designs, the laughs, the cheekiness, the 'Thank you Miss' 

(although I am a Mrs but who cares :)!

I learned that literacy is not complicated, just READ READ READ and SUPPORT A READER ... that is all. Always encourage, just enjoy each other's voice: the voice of the child who tries, and make your voice pleasant to the child who listens. Just be kind to each other, and the rest is just magic unfolding through your eyes. You don't fully understand why, but before you know it, the child becomes more and more proficient: it is not totally your making!

My kids were from China, Pakistan, Iran, Afghanistan, Thailand, Cambodia, Sierra Leone, Ethiopia, Somalia, Erythrea, Irak, Congo, Russia, etc. some were refugees (I'd say 80%), and some were from newly arrived migrant families. 

Prospects of a brighter future was beaming in all eyes! Some kids had to travel a long and complicated way to come here and sometimes, but they did not complain easily. The only question I would allow myself to ask them was: 'how long have you been learning English?', and sometimes, they would explain a lot, sometimes not much at all, and I would not ask more. Sometimes, they would say: 'I did not go to school because there was war'. While reading how to make kites, a little girl told me about all the kites she made back then in Irak.

Eid Mubarak token on my last day - that was lucky :)

Farewell Card from the amazing Team Leaders with beautiful Rooster painting from the Kids

Corina 50

After a long long long time apart, my friends and I finally reunited for a big occasion, the big scary 50, and for the first time, I celebrated my birthday in Australia.

I rented a dream house on the beach for a day, and we all went a bit crazy, drunk from the joy of being reunited and letting lose.

C'est une maison bleue ...

In fact, it was all the more special that my twin friend, baring the same first name, came all the way from France (20 000 kms) to celebrate her birthday with me - we are both born the same day.

Corina 50 from Corina Roe

Imagine you could have a marriage that would be an like Art work ...

"I was really excited to discover that marriage is simply what two people say it is. So like an art work, we could create anything we want inside of it" 

(Jonathan Rosen, a man whose wife said he saved her from a morbidly bland existence: )

How to put an end to world poverty by P. Singer

I just finished the excellent book 'The life you can save' talking about how to alleviate world poverty by Peter Singer I got acquainted to (his readings) while I was studying International Relations. 

What struck me is how simple it could be...

Solution 1 - If we calculate how much income falls below the poverty line in the world, and then how much money it would take to move all the poor above this line to the level they have enough to meet their basic needs, it would be 124 billions USD (2001, Jeffrey Sachs)

The annual gross annual income of 22 OECD nations is 20 trillions USD, therefore the contribution needed is 0.62% of income (less than 1%). For someone who earns 50K a year, this means $300 !

By comparison, in 1999, Americans spent 116 billion USD on alcohol (Journal of medical association, 289, 2003 pp989-95)

So all it would take to end world poverty is that OECD country people ask their employers to implement a opt-out solution (meaning you have to explicitly say no if you don't want to participate) to take 1% off their salary (unless they explicitly say 'no'). He explains that this is already done by some US companies, and it was modelled out of the organ donor scheme in Austria which saw more than 90% accepting to give organs in case they die thanks to an 'opt-out' solution as opposed to 17% in a similar country, Germany only because in Germany it is voluntary (as opposed to opt-out).

Another advantage of this solution is that you can use it as a much needed and valuable team building tool in companies: employees will have something worthwhile talking about at coffee breaks, when they will have to decide in which fund they should put their common money. Peter Singer explains that although many people do make donations on their own, they don't talk about it as not to 'offend' or as not to seem 'counter mainstream'.

or

Solution 2 - We see a massive pledge in the West of stopping alcohol & soft drink consumption. I propose that every time you compulsively wish to buy a beer or a soft drink, you press on a three dollars button on your 'Save the world' phone app, and we will get to 124 billions easily ... at the same time, we sort out road death toll, obesity and domestic violence seriously ... real problems!

This would not solve the world poverty permanently, but it would save lives. Of course the solutions are more complex than that and multifaceted... but that is another few chapters of Peter Singer's book, 'The Life you can save'.

If you wish to meet the standards, visit www.TheLifeYouCanSave.com (Peter Singer)

Is 1% too much?

Well, let us be reminded that the large world religions had worked it out before the economists: 

'your surplus at the present time should supply their needs, so that their surplus may also supply your needs, that there may be equality' (Paul, in the second letter to the Corinthians)

Same thing with Judaism. The Hebrew word for 'charity', tzedakah, simply means Justice. In the Talmud, it is said that Jews should give 10% of their income as tzedakah.

In Islam, the requirement is to give 2.5% in addition to sadaqa, which would resemble more voluntary work (optional)

What are we talking about when we talk about poverty here?

Don't read this if you are afraid of the truth ... (aren't we all)

We are talking about 24 000 children who die from avoidable causes every day

We are talking of the millions of women who are living with repairable fistulas

We are talking about the millions of people who are blind but who could see again

The good news

We can do it. In 1960, 20 million children died before their 5th birthday because of poverty. In 2007, it is 10 million a year with a population that has more than doubled (UNICEF figures)

Yet, the 10 million remains a tragedy in a world where these lives could be saved a the cost of few less damn soft drinks a year for the wealthiest.

As Peter Singer says, 'if you are paying for something to drink when safe drinking water comes out of your tap, you have money to spend on things you don't really need'

Silver Jewels

During Uni break, my daughter attended a 7 days Tafe Prof Course of Jewelry Manufacturing 

Voici l'Oeuvre d'Art!

Entire collection :) - Silver

Pendant with skin like texture in the middle of the flowers

Classical Earrings - Will be great with a pair of jeans

Pinky finger ring

Necklace made from scratch (silver thread)

Silver Alliance

Pendant

D'aguilar National Park

Today, the hibiscus flower came back to life

After shocking high temperatures last week 36C, combined to a very high level of humidity +60%, it felt we were in 38C+ temperature, with no respite at night. 

In addition, since the beginning of the summer holiday, all members of my family fell sick one after the other, including myself at the end.

Yesterday, we could FINALLY breathe again, after very much welcomed rain at night, and the first thing I saw this morning was a pink hibiscus flower coming back to life, opening up again.

Je vous présente ..... sa majesté La Fleur !!!

Other lesser creatures hanging out in my garden :))) - Please note, I only have wild plants that I do not need look after, and I like them all the more for that :)