Put a smile on your dial, and maybe a tear in your eye too :)

Jet lag…

Jet lag is interesting *yawn*  Sitting here at 10:30pm at night, I feel like it’s almost dawn *yawn* My eyes are crossing and my mind is fogging over, but I have so much that I want to tell you! *big juicy yawn* So much has happened in the last three days since arriving in my home town of Perth, like, singing in the WA Charity Orchestra again (Donna and Sam did such a wonderful job pulling that together to raise more funds for Princess Margaret Hospital for Children – charity of which my children are direct recipients – thank you), seeing my family and making more friends than I did this whole last year in Utah – in only three days!

I know, crazy right?

But, because I can barely think straight or see straight at the moment, I want to just take a moment to say, “Goodbye beautiful Hawaii, I loved you, you loved me, you will always have a special place in my jet lagged heart…”

(Wow, I actually fell asleep waiting for that picture to upload)

“And uh, what was I saying, oh yeah – HELLO PERTH!!!”

xox

Last call for recipes!

Hi everyone!  This is the last call for recipe donations for the Cure Congenital Muscular Dystrophy Recipe Book Fundraiser!  Thank you to so many who have donated recipes thus far.  Mwah!  Mwah!  Big kisses to you all!

I have dozens of delicious, mouth watering recipes care of you – thank you.  Before I type up the last of them, I wanted to put one more shout out for any family specialties or favorites that you would like to share for a good cause.

Many thanks from me and my children who will directly benefit from continued Muscular Dystrophy research.

xox

(Email recipes to jasmine@glooart.com or post them here on this blog.)

Okay, so I thought I’d do a nice normal post with absolutely nothing controversial or political in it. Sound good? Yeah, it does doesn’t it :)

With a house full of sickies the last two weeks, my nursing hat has primarily been on.  But strangely, I’ve also been able to write more than 30,000 words for my Nanowrimo November Writing Challenge – Woot! Woot!  This is more words than I have ever put together for a story in the past (by a few thousand words) and I’m more than half way to novel status!  Woohoo!  And, I must add, I am loving it.  I am loving the whole process of creating lives and loves and heartaches and triumph over adversity.

And then I woke up to this yesterday morning, so I had to run out camera in hand, blinking the sleep out of my eyes to catch this memory of our backyard in Logan Utah:

I’ve also been able to whip out some new paints I’ve been dying to try out since they arrived by UPS last week.  They’re called Claudine Hellmuth Studio Paints and I am loving them so far!  I still love the consistency of my Jo Sonja Gauche paints for fine detail, but these Studio acrylics are very fantastic, I must confess.  They are definitely my favorite acrylic paints to date.  Last night I doodled around with some ideas for online e-cards and print cards for Shriners Hospital for Children.  It was fun to have a paint brush in my hand again :)  It’s been a little while.

So Halloween was pretty fun, for everyone except for poor little sick Isis that is.  His father had worked for over a month on his AMAZING Warhammer Costume, but Isis was too sick to go :(  Me?  Oh, I’m the behind-the-scenes-person these days – makeup artist and photographer, you know the drill.  There’s not enough time in the world to get me ready as well as everyone else – I just take way too long to get made-up to a standard that my perfectionist personality would be satisfied with :)

Phoenix was Mulan Princess Ballerina (in case you couldn’t tell).  Phoenix and I got free tickets to the Utah Ballet and everyone loved how she looked like a princess at the performance.  Later that night we went and visited Auntie Candice since we were half way to her house being at the opera.  We went to a Halloween dance in a big barn with her.  Phoenix made more friends than anyone else there combined (seriously), dancing around so happily in her walker, absolutely loving life.  (”Mummy, we did SO much FUN today!”)

They love their daddy, the funnest daddy in the world with the coolest real-life mustache with curly edges for Halloween.

And look, even though Halloweens all about the candy and playing dress ups these days (as opposed to it’s more darker historical roots), some inspiration for our lives can be found through the gluttonous consumption of said candy:

Free Digital ScrapArt Downloads to Help Muscular Dystrophy Research

Recently, a beautiful French woman by the name of Pati (you’ve got to check out her amazing blog) approached me with a desire to help our financial situation due to high cost of healthcare in America. Having two children with Muscular Dystrophy means they need to access that healthcare system on a daily basis.  She wanted to offer her artistic talents to help raise funds for our frighteningly large medical bills.  Her offer literally brought tears to my eyes – she completely blew me away.  I was so touched by her kindness and generosity.  Since I have spend a good part of the last twelve+ months finding ways to take care of these huge bills in a way that wouldn’t involve bankruptsy, I felt that we were actually in an ok place right now regarding those bills (sortof) and that the place where additional funding could most benefit our children at this point was The Muscular Dystrophy Association of Western Australia.  The NeuroSciences lab there is at the forefront of cutting edge research in muscular dystrophy.  Even though the clinical trials happening there right now are for the more common Duchenne’s Muscular Dystrophy, I believe the science behind the trials (exon skipping) the most likely to have an impact on our children at some point down the road.

Look how amazing she is!  Pati put together two digital scrap kits:  The Love Kit and Merry Christmas Kit just for us.  She is amazing.  You can download these for free with the hope that you may give a donation – large or small – to the Muscular Dystrophy Association of WA in return.  Many thanks to Pati and many thanks to you for supporting a cause so precious to me.

xox

Donate to The MDA Today!

Download Free Digital Scrapart Today!

(These took me about 15 minutes each to whip up from some of Pati’s designs – thanks Pati!!)

(And look what pretties Pati made!)

do you guys have any delicious recipes to share?

Hi girlies in my life,

I have been asked to help collect delicious recipes for a massive Cure Congenital Muscular Dystrophy fundraiser.  They are putting together a classy recipe book and need mouth-watering recipe donations.  Can you guys email me or post your favourite recipe(s)?  I know that some people have ’secret’ recipes, but think about sharing those too for a really good cause (except for you Kelly, I still think you should be packaging and selling your brownies world-wide – you would dominate the world brownie market.  Keep that recipe a secret for sure ;) 

But for the rest of you, please share!

I will be sharing my Fudgy Yummy Carrot Brownie Cupcake Recipe and my mum’s Caramel Slice Recipe.  Oh, and her Carrot Cake TO DIE FOR Recipe.  Oh and DEFINITELY Cyndee Hamilton’s Lasagna from my days working at the Perth Mission Home…  How about you guys?  Anything delicious come to mind?   I would love to see recipes flooding in from my friends all around the world.  What a diverse bunch of deliciousness that would be!!

The Cure CMD team is working so hard to get more funding into research and raised awareness for the plethora of Muscular Dystrophies that fall under the congenital (from birth) umbrella.  Isis and Phoenix fall under this umbrella and I was approached by the foundation after they stumbled across my blogs last year.  Many of the people behind the scenes of the CCMD foundation are parents of children with CMD themselves and are, in my view, supermen and women.  As many of you know, having a sick child and living in America is a financial nightmare on top of the heartbreak of having a sick loved one.  I tip my hat to these amazing people who find the time and emotional strength to do so much more than look after their precious children.

So will you guys email me something delicious to pass on?  Let me know if you don’t want your name on the recipe.

Thank you!!

Love Jaz xox

PS Have a look around their beautiful site.  To make a donation, click the donate button below or visit the Cure Congenital Muscular Dystrophy site.  Every dollar counts, whether large or small.  Much love and appreciation xox

Credit Card / PayPal

To donate to CureCMD via credit card or PayPal account, please click below. Note that if you wish to pay via credit card, please follow the “continue” link to the left of the Paypal login box on the next screen.  The blue “continue” link is under the heading “Don’t have a PayPal account?”  On the paypal screen after entering your credit card information, there is an additional line on which to add a Donor Message if you would like to make your donation in an individual’s name.   To set up recurrent donations, contact pat.may@curecmd.com

8 mini goals for this week

I thought I would take a page out of N’s book and write me some character building mini-goals for this week:

1.  Write a meaningful blog every day for a week.

2.  Do 3 of Keri’s ‘100 Ideas’ (see below) (the ‘do nothing’ idea really struck a chord)

3.  Finish ‘The Kiss” painting for mumbo-gumbo.

4.  Give away a piece of jewelry to someone special :)

5.  Do another portion of the September Photo Interview.

6.  Write meaningful letters to all of my friends.

7.  Be asleep by 11:30pm each night…

8.  Find a tunic that I love – then buy it (maybe not so character building, but I really want a flowing summery tunic for when I go back to Australia at Chrissy….via Kauai… have I mentioned that Phoenix and I will be spending 10 nights in Kauai?  HEAVENLY ;)

trust your crazy ideas

Have you ever felt like you have no real friends?  That no one really likes you?  That you are not so cool outside of your own lunch box?  That there is not really anything special about you after all?  That no one actually gives a damn?  That you have accomplished nothing worthwhile?  That life is slipping through your fingers way too fast?  That you are a thorough failure in so many areas of life?  That you are weak and pathetic because you eat too much chocolate?  That your voice can never really be heard?  That you are powerless to make any kind of real change in the world?  That you are too tired to think or see straight?  That life has dished out one too many disappointments and the camel’s back is broken for good?  That the hardness in your heart is too thick to ever break?  That there is no hope of feeling happy , fulfilled and content again?  That if one more insincere person says one more insincere thing, that you just might vomit in their face?  Violently?  That it is impossible to make real human connections without being crapped all over?  That you really just aren’t that likable?  That you smell white trash, look white trash, therefore must be white trash?  That life is full of potential and reward, for other people?  That you are not worthy of love and affection?  That you are just plain gross?  That you are so sad and you can’t imagine a heart being able to handle any more breakage?  Then it breaks again?  Have you ever heard siren’s off in the distance and cried over who may have died?  Have you ever been full of self-confidence one day and have it shattered completely the next?  Have you ever given in to the intimidation of your deepest dreams?  Have you ever settled?  Have you ever run away?  Have you ever fought and won?  Have you ever fought and failed?  Have you ever fought so hard for so long with so little reward that all the good ju-ju got sucked from within?  And you can’t find it again?  Have you ever hid when you found out a person could see aura’s?  Because you didn’t want them to see how black yours had become?  Are you hiding now?  Escaping?  Wishing for courage?  Wishing for even the smallest hope to cling to?

If yes, then know that you are not alone.

Two little lesbian angels send me the most beautiful parcel full of the most thoughtful things yesterday…  Perfect timing ladies, thank you so much xox  

Maybe I do have at least two friends in this big wide world… who spent their time and money to send me something so very thoughtful.  Perhaps I am not completely unlikable, all the time…?…

(Apparently the mini horse shoe was really hard to find.  Thanks guys, it means so much.  I love my big box and especially the little box of goodies.  When I received your package, I really needed a paper clip, to help hold it together and the marbles, because I had completely lost mine… and I always need a heart, to remind me that someone somewhere cares…)

after a rather sleepless sleep study :)

I am finding it difficult to adjust to how different, complex and innefficient the healthcare system is here in the US.  It causes me great sadness and anxiety having to deal with it as often as I do, with two children with Muscular Dystrophy.  A cardiologist asked me today, “why on earth did you leave Australia?!”  I responded while shaking my head, “I know, I know.”  I could hear a slight Canadian fleck in her voice – she has no doubt had experience in a health care system similar to Australia, and knows that this, the United States of America, is not the place to be if you are sick.  I told her, as I do everyone who asks that question, “We came here for all the other reasons – definitely not the healthcare system…”  

There are many reasons to love this place – it’s diversity, it’s amazing landscapes, it’s sense of adventure.  But, there are many ‘buts’.  So much poverty and so much greed.  So much ignorance disguised as patriotism.  So much potential, so many bad political decisions.  So many people dying needlessly because they can’t access the care they need because of the ludicrously high cost of healthcare…

I stumbled across this picture just now, of beautiful Phoenix looking so happy after a nightmare of a sleep study.  An untrained technician on minimum wage was the sole person in charge of operations and it made me nervous to the point that I doubt the sleep study results and have not changed the settings on the children’s bi-paps.  I miss you Princess Margaret Respiratory Department in Perth!!  Your beds may not be as posh as the sleep study beds here (whose pointy edges gouged my thighs each time I got up through the night), but you are professional, caring, genuine, trained and you do your job well…  It is not about, ‘how much profit can we make from Jasmine and her unfortunate circumstances today?’  It is all about, ‘how can we help your beautiful, special children be healthier and stronger…’

awesome

Thanks to Roma for sharing this little find with me – an article about the Assistive Technology Lab teaming up with Shriners to help my little Fi-fi.

http://www.cpdusu.org/featuredstories/shrinersATlab/

In eight months of being here in the US, we have accumulated more than $100,000 in medical bills for the children and this keeps growing by more than one hundred dollars each day.  It would have been much more if we hadn’t brought so many supplies and equipment with us from Australia and hadn’t been the recipients of so much love and charity from others.  Even the wealthiest of the wealthy could not keep up with have sick children in this country.  When medical care cost on a daily basis, insurance companies are unaffordable and have fine print to get them out of almost anything.  Did you know that more than 18,000 Americans die needlessly each year because of the the inflated cost and inaccessibility of healthcare – even with insurance?  And did you also know that despite this being the United States of America, we are listed by The World Health Organization as being ranked #37 in the world for healthcare and yet we spend more per capita than any other country on healthcare? The US should be number 1.  Given our technology and wealth, we should at least be up there with all the other first world countries (who by the way, all have universal healthcare paid for through taxes which I have experienced and loved, loved, loved.)  The government should be hanging their heads in absolute and utter embarrassment and shame at how poorly their citizens are looked after, at how most bankruptcies are health-related debt and at how US citizens have been lied to for generations about better health care alternatives being ‘evil’ or ‘communist’.  Come now!  Tis a little ignorant.  Please let me tell you that there are other ways that are better and cheaper.

I heard a quote a few months ago on change.org that went something along the lines of: ‘if we can find the money to kill people, then we can find the money to help people.’  I know it is a touchy topic, but the broken healthcare system effects us on a daily basis.  I have never experienced stress like this in my life.  I am literally turning grey and wrinkled at the age of 31.  I have researched heavily into the topic, I have spoken at the capital, I have written a plethora of letters to our government representatives, but there is so much fear of change and so many pockets that are sweetly lined by the wealthy profit-driven insurance companies.  (The ratio of HMO lobbyists to congressmen in Washington is something like 3:1)  It is quite thoroughly discouraging, especially when all the figures show that switching to a medicare-for-all type system like every other first world country is pretty much a no brainer.  The US is in the perfect situation right now to look at what every other rich democracy has been doing, what is working well, what isn’t, and create something very effective for the US.

We are so dependent and grateful for charitable organisations like Shriners and the Assistive Technology Lab at Utah State University.  They are very literally life savers for us.

Thank you!  Thank you!  Thank you!

xox

charity

♥love♥

♥ we love shriners ♥

We love Shriners Hospital for Children!  It is such a peaceful and generous place – it hits you the moment you step through it’s doors.  There is a warmth in the air that puts worried parents at ease and make anxious children smile.  We were back there yesterday getting Phoenix’s back brace and orthotics fitted.  The children love going there because everyone is so kind and sweet to them.  It is so important in situations like this that the children feel comfortable, safe and special.  They hear everything that is going on and have a lot to bear on their little shoulders.  I remember when my son started losing his hair from the worry that he held bravely inside.  It is too sad that these little angels have to know so much seriousness when all they should know is the carefree freedom that comes with childhood.  I must confess, the stickers and special treats help the load seem lighter – we are talking the coolest stickers and prezi’s ever.  Barbie stickers, Batman stickers, My Little Pony stickers – the best of the best!  I think it is so wonderful how people donate treats to hospitals like Shriners – thank you, whoever you are!  It puts a bright spot on our sometimes serious and worrisome visits.  It gives the children a lovely distraction and something special to look forward to.

Thank you Shriners and thank you to everyone that donates money and goodies to help make Shriners such a wonderful place of care!

If you would like to donate to Shriners, please visit http://www.shrinershq.org/

Thank you for helping my precious children!

♥♥♥

springtime flowers are the sweetest thing…

There is something magical and calming taking a drive through a town blooming in the happy colours of spring.  I decided to take the scenic route to my friends house for dinner this evening, after our Shriners appointment… and it was soooo beautiful!!!  The colours and flowers of spring take my breath away!  What a pretty season.  And you know, I think I may say the same thing about summer and autumn, just like I did with winter and now spring… :)  There is so much beauty all around us *sigh*.  We don’t see the distinct seasons as much back home in Perth, so I am savoring every moment of the treats each season send our way.

Jasmine

xox