i have a b.f.f.


(By Jasmine Bailey-Barfuss; starring Jasmine and David; Photos by my 9 yr old niece who we discovered really, really, really LIKE-likes my new b.f.f. – bless)

my-bff-david-woodward

I have a BFF and his name is David. 

Yes that’s right, The David Woodward – you’ve heard of him?  The beautiful Tenor with a voice so warm he could melt the polar icecaps?  

Yep, that’s him.

The guy with high notes so dreamy he could bring even the coldest of hearts to tears?

Yuh-huh, that’s the guy.

With a smile so inviting it could stir the masses into spontaneously hugging each other and, ultimately, inspiring world peace?  (It is one of his many super powers.)

Yes sirree!  That’s David and yes, he is that powerful.  

And cute.

And wonderful.

And I am so in love. 

The Blissful Happy Gooey Kind of Love.  You know, the kind where you just can’t get enough of every little thing that comes out of that person’s mouth?  (Especially when they’re singing?)  The kind where they could have a big huge yellow pimple on their swollen chin and it wouldn’t even matter?  (Not that he of course would ever have a pimple on that beautiful face of his – but if he did, I swear I wouldn’t even notice!)

And whether he wants it or not, he is most certainly my new bestest-estest friend. 

Forever.  

my-bff-david-woodward-2b

I mean, how could I not want to be surrounded by his creative genius and cute eyelashes.  It was like love at first sight when I saw him standing there, waiting for his turn to sing at WACO rehearsals the other day (it was as if my sub conscious screamed, ‘this man will be fabulous for your self esteem Jasmine, you must meet him and claim him for yourself – now!’  But of course my conscious mind didn’t hear that, it just slowly gravitated towards him like an electron zips around the outer edges of an alluring atom) – as it was with my other two men-friends who preferred shopping with me, over making out with me.   

my-bff-david-woodward-3

It’s quite strange actually, the magnetic pull that presents itself just a few times in a lifetime – the pull that drags you to a person even if you are kicking and screaming trying to run the other way.  The pull that dragged me to JB in the lunch-line in the cafeteria at Brigham Young University in 1995 – the second we found out that both South Africa and Australia have both vegemite and milo, we were fabulous friends for life; the pull that dragged me to the eccentric and passionate deep-thinker JC in 2000 – the second I heard his booming laugh, I new that I wanted his laughter in my life for the rest of my life; you know that pull that only happens a handful of times?  I can count on about six fingers the amount of times I have made an instant bff – the kind that just clicks perfectly like a missing piece to your puzzle, at very first contact – and I can recall vividly the moment each of them entered my life.

And changed it, for the better.

my-bff-david

One thing I have recently rediscovered (and my parents knew from birth) is that my personality is the type that craves, well, umm, how do I say this… attention.  Maybe its just vanity, maybe I just like to be called ‘Pumpkin’, but I think that people who think that I am fabulous are, well, absolutely positively unbelievably fabulous too!!!

Sigh.

I like friends.  I miss friends.  Why am I living in America again?  She wonders quietly to herself.  I have so much a history here, so many more special friends than I ever truly realized.  And now I’m making special new ones and it feels so good!  Will I ever make friends in America?  Am I too confrontational, too independent and non-conformist??  Maybe it will just take more time…  maybe…  maybe I just need to get out more in America… maybe…

As my new friend and my niece took turns serenading us with their musical voices, I sighed a happy contented sigh and thought, life is good.

I am grateful for good friends.  (Especially the kind with big muscles that carry my heavy shopping bags whilst Christmas shopping in the city yesterday.)

Grin.

Love Jaz

xox

 

 

Our Talented Photographer, my niece:

photos-by-Kiyomi


9 Comments » Posted: December 22nd, 2009 |  Author: jasmine  |  Tags: ,

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Riding in Planes With Boys


There is no such thing as ‘good traveling’ – not if an airplane, airport and connecting flights are involved. 

No sirree. 

I don’t care who you are; good travelling of the air variety just does not exist!  I dare anyone to say otherwise!  (Unless you’re superman, then I will believe you.)  And it’s not just the squished up seating with no room to move and being packed like sardines in a can full of people hocking loogies and spreading their wonderful germs to the unwilling world – it’s so much more than that. 

It’s how much it costs, for starters.  THOUSANDS of dollars JUST to get a tiny square to put your bum on – no meals included and in-flight entertainment?  That’ll be $16 dollars please!  And if you want to have baggage – WELL!!  That’ll be $20 per bag thank you.  Oh you have three bags, well that third one will be $40.  Have a nice flight! 

A what? Baa a a aaaaaa.  Did she just say “Have a nice flight??”

Pardon-moi?  I am pretty sure that even the posh people with the fancy reclining chairs in first class are STILL not having a nice flight.  Sure, they are a little less squished, but they still had to remove their laptop from its bag to go through the metal detector scans.  They still had to remove half of their clothing and jewellery, not to mention the belt buckle and shoes!  (poo-wee!)

“Excuse me sir, is this your bag?” 

“Ah, yes, yes it is?” 

“You need to remove all individual liquids and creams and put them in a separate box.” 

Oh, the darned toiletries kit – forgot about that one.  So many rules to have to remember these days… gone are the old days of just skipping onto a place three minutes after check in…

“Sir? I am going to have to confiscate your tweezers and nail clippers – they are a potential lethal weapon.” 

“(Snort) A what?”

“You could hijack a plane with these.”  She reaches with a gloved hand to place the shiny weapons in her uniform breast pocket.

“No – PLEASE!!  They’re Laura Mercier!  A totally overpriced gift from my wife – she will kill me!” 

“I’m sorry sir.”  No she wasn’t.  She shrugged with a slight smile – she is totally going to pocket those, he realises with a taste of bitterness rising in his throat, and I will be put in the dog-house for AT LEAST three weeks for not thinking to pack them in my luggage… She’ll see it as a sign that I don’t actually love her.  But I just really like to groom while sitting on the toilet doing my business and what better way to pass time on a boring airplane. 

Damn it.

And then the posh people have to somehow remember to have their boarding passes and passport ready in their hot little hands as they pass through the arch-of-doom, just like us – you know the arch that lets the uniforms (and the government) know if you’re secretly packing or not.  They freak, the first-class-people, just like us economy-class-folk about whether or not they secretly put their handgun (that they may or may not even own in reality, but what does that matter when it comes to irrational fears of being stripped searched and hauled off to Guantanimo Bay for life without trial) in their back pocket that morning without thinking. 

And, despite their poshness, they still find themselves walking halfway to the gate without shoes (it’s hard to tell with that soft carpeting in Salt Lake Airport) (at least that was my excuse, but really, I’m just not used to wearing shoes anymore – my cracked heals are my shoes) and have to sprint back, holding far too much hand luggage to allow proper sprinting, put on forgotten shoes (that had since been collected for suspicious reasons and were being scanned for bomb-making fibres), sprint back only to just barely get to the flight on time. 

Finding his seat, the hostess rushes him (politely – because he’s first-class) because he’s holding up the whole plane,  so he frantically throws his bags into the overhead bin without grabbing his thoroughly interesting book that he was right at the climax of.  So then when the plane ends up sitting like a couch-potato for fifty more minutes waiting for a gap in runway traffic, he is bored out of his sweating skull, but can’t move to retrieve his book because the fasten seatbelt sign is on.  Gal!  As his sweat dries he realises with shock and embarrassment that he is one of those smelly sweaty people on a place – nooooooo!  He screams internally.  Then he wonders if he is far enough away from his neighbours to have his odour dissipate before it reached them.  His armpits instinctively squeezed tighter together, but the more he squeezes, the sweatier and stinkier he becomes.  If only they hadn’t stolen his aftershave!  He could have totally given himself a perfume bath once the damned plane was finally in the air.

Yes, that’s right, even the first class has smelly sweaty people, just like me and just like you.  (Well, just like me for sure and I can’t be the only one because I’ve sat next to them before…)

And to think you thought you were safe, arriving twenty-six-thousand hours early for your flight.

No sirree.

There is no such thing as being safe when it comes to airports – I mean, obviously.  The amount of times my luggage has been searched (how embarrassing), my personal items checked for bomb-making-residue and my ample body padded down – it is OBVIOUS the airport is a dangerous place to be. 

At least, when I’m there it is.  Apparently.  The whole place seems to go on full alert.

“BEWARE, BEWARE, SMELLY-OVERWEIGHT-JASMINE IS HERE.  SHE IS SOOOO OBVIOUSLY DANGEROUS – what with that black hair and… all.  She used to have long red nails people and she had a nose ring, three times – ALERT, ALERT, MAKE SURE SHE DOESN’T SLIP ANYTHING PAST US THIS TIME!!  SHE MUST BE BAD!”

Then add one adorable little three year old that gets around in a little green walker to our quaint airport story. 

With a runny nose (yes I know, we both manifested buckets of snot the day before our flight and became ‘those sick and careless’ people that I loath – but our tickets cost so much, we HAD to make the flight!  And at least we weren’t coughing!!  [much]) 

Then add Horny-late-twenties-guy-with-shaven-head sitting next to us who OBVIOUSLY had no children of his own.  How do I know this?  Well!  For starters:

  1. He kept groping his girlfriend (under her pants) whenever she stopped by for a ‘visit’ – ummm, hello? 
  2. They both used the word ‘shit’ like there was no child present and like the whole world casually swore in everyday language all the time;
  3. And then he went and put on the most VIOLENT movie HE COULD FIND on his $16 in-flight entertainment.  And OFCOURSE she watched it  or tried to – she is a child!  All children’s eyeballs are programmed to stare at any tv-like device without blinking for hours on end.  It’s genetics.  (Which then cued my smooth parental distracting with colouring-in and fluffy toys.)
  4. I SWEAR I sore his actually push Phoenix’s little miniature elbow off the arm rest so he could be more comfy while watching his in-flight-entertainment on his pull-down table (THAT is something only I am allowed to do!  Elbowing little children…. Cheeky!)
  5. Which then cued her spilling a drink all over said-horny-neighbours-in-flight-entertainment.  He freaked!  “Shit, shit, shittity, shit!  Arrr  grahhh huff puff sooky sook!!”  You should have seen how loudly he sighed and did this whole body language thing when a little drop landed on his thigh… 

A wee little drop.

GEESH!  That’s nothing mate!  One time, when Isis was three months old, he PROJECTILE VOMITTED IN-TO-MY-CROTCH ON AN AIRPLANE – at the very beginning leg of a two day journey across the globe from Perth to SLC!  And of course I didn’t have a change of clothes like some wonderfully-organised people do – I had to use my space for nappies and bottles and what-not didn’t I!  So there I was, with a warm soaking-wet crotch, covered in baby vomit, squished into a seat like a sardine, no room to air out or anything.  Now THAT was something to complain about!  Talk about GROSS!!  (However the baby doing the puke was thoroughly cute!)

(BTW his in-flight entertainment was totally fine, just got a couple of droplets…  He was just concerned about the droplet on his thigh – you should have seen the way he watched the water on his tray move slowly towards the edge.  He just watched it!  Hello!  Block it with your hand or something?  Again, he has no children.)

  1. Then cue cute three year old vomiting into the closest thing I could find – a cracked plastic cup in the seat pocket.  Puke and yellow bile oozed out of the cracks, down my fingers and onto to a snotty tissue (we’d run out of clean ones at that point.)  Mr Horny-Neighbour who had just been in the ‘toilet’ for twenty minutes with his Miss Horny-Girlfriend (yes you read that right and they practically fornicated again right there in front of us afterward -  A+ for stamina AND grossness), he nearly vomited.

Ha.

See?  Definitely no children.  But he was practicing for children with Miss Horny-Girlfriend an awful lot and I couldn’t help but quietly laugh to myself at how UN-BE-LIEVABLY SHOCKED he was going to be when he finally knocked that bird up.  I could tell almost immediately that he was a carefree outdoorsy guy that went surfing in Hawaii whenever he wanted with absolutely nothing in his life to hold him back.  You know, no real responsibilities and all that.  (Watch out Miss Horny – as soon as you start acting like a real girl, or a real wife he’s going to DUMP YOOOOU!!)  I mean, the way he publically GROPED Miss Horny RIGHT IN FRONT OF ME AND PHOENIX said it all!  …Completely oblivious to anything else in life except for his own needs and urges.

And boy did he have urges.

Ick!  A slobbering bucket of horn-ballness!!  Talk about P.D.A.! And moaned and groaned… and all sorts.  (Awwwkward…)  I mean, come on you two – Hello!  Three-year-old-girl sitting right next to you, watching EV-ER-Y-THING you are doing to Miss Horny right now!

“Hey Phoenix…”  I say, “Umm, what’s you’re favorite colour?…. Do… you want to swim with dolphins?”

“I wan to in weel wife!!  Pweese mummy!  Swim wif da dofins??!”

Premature birds and the bees discussion narrowly averted. 

So the moral of this story is: Plane Travel = Hell On Earth (or hovering over earth.)  (Let’s not even talk about how far away our gates were at each stop.  We literally had to walk through ice and snow to get to our first gate – luckily we hitched a ride with the golf-cart-lady half way there otherwise our journey would have ended before it even begun.  The gate was LITERALLY one mile’s journey AND an outside one like the olden days.  Then Seattle!  Ar!  Train after train after train after train after train to get to the connecting flight!  The gate was closed when we got there and Phoenix was huffing and puffing somewhere behind me in her walker – she did so well!  She walked further than she had in her life!!  But because our first flight was an hour late, we nearly missed our next flight.  This was the point where I began to be one of those smelly people – from all that rushing and running and stressing – it produces a particular armpit odour that no deodorant can protect from!)

airport

And then, the car rental companies – oh!  E-VIL I tell you!  I actually wanted to die after trying to get a car for three hours last night.  LET ME JUST WARN YOU THAT THEY DO NOT ACCEPT DEBIT CARDS IN REAL LIFE.  It doesn’t matter what their ads say, or WHAT they tell you on the phone, or WHAT the manager says on the phone twice just days earlier (grr), you have to own some sort of major impressive REAL credit card with lots of debt to be able to rent a car in the USA.  You cannot be sensible and rent a car.  You have to be loaded with real, high interest credit cards in your wallets. 

The golder the better.

Let’s just say that by the time the taxi came to get us I wanted to slit my wrists…  Not only was using a taxi to drive one hour the same cost as renting a car for a week (they were really sweet and the ride was awesome) but I had called several times to make sure the rental with AVIS was all set (yes I DID just name drop).  Both Nick and myself had spoken to the manager even (grumble grumble.) 

I don’t WANT to get a major credit card JUST so I can rent a car!!!

ARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!  WHYYYYYYYYY DO THEY SAYYYYYY THEY ACCEPT DEBIIIIT CARRRRRRDS!!!!!

And don’t believe your bank when they tell you your visa/mastercard debit card “is just the same as using the real thing!”

Bollocks that is.

All lies.

But you know what?  No matter how smelly and sore and tired and irritable and sad and irrational and covered in tears and baby-puke you are by the end of a trip, it always ends with something wonderful:

YOUR DESTINATION.

Four hours after we landed last night, myself and a very tired and sickly little three-year-old came home for the next 9 days to this:

kauai-midnight

A full moon looking over the Pacific Ocean at midnight.  (The shutter was open for a few seconds in this shot.)  The first thing we did after the sweet-as taxi driver and his girlfriend helped us haul our luggage inside was walk to ten steps to the shoreline through our back doors.  Phoenix thought the large black rocks in the sand were giant starfish. 

This morning she thought the birds cheeping were actually dolphins talking to her from the ocean.  (She can’t wait to have that ride on one…. if I had a car maybe we could hunt the island until we found one…)  (I’m not bitter about the car anymore, really!  It’s far too beautiful here to be mad about anything for more than two seconds.)

kauai-morningkauai-morning-2kauai-morning-3

And now, the nightmare of yesterday is only a faint memory, quickly being erased as each minute passes in this paradise.  Sure, we have an even longer plane ride yet-to-come to reach Perth from here (and a 10 hour overnight layover I’m trying not to think about), but again, the pain and agony of flying will be worth it when I smell that Perth air once again, hug my family, see Phoenix laugh with her cousins and when I jump into the Indian Ocean.  My ocean.

We will quickly forget how horrible it all was – kind of like child birth – and do it again, and again, and again…

Us humans are funny like that aren’t we.

Yes, travelling doth sucketh.  But reaching the final destination rocks.  Look what we woke up to this morning:

kauai-morning-4kauai-8kauai-morning-6

I knew it would be all better when we woke up this morning, and it was.

Now, off to collect some more heart-shaped coral washed up on the sand…

Love Jaz

xox

(PS PLEASE EXCUSE MASS TYPOS!!  Very jet lagged when writing this! :)

(PPS DO NOT READ THIS WHILE FLYING – your flight will suck even more as a result :)


11 Comments » Posted: December 5th, 2009 |  Author: jasmine  |  Tags: ,

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family ties


family-ties-1

I bet you didn’t know that right here in lil’ ol’ Utah is a dinosaur museum of mammoth proportions?  The North American Museum of Ancient Life is the world’s largest dinosaur museum. ”It takes you back in time for a hands-on trip through an amazingly lifelike prehistoric world. Kids can dig up their own fossil, construct a giant dinosaur or build their own private sand valley (complete with real eroding rivers).”

It portrays a world completely foreign to us today.  So foreign, that is feels alien, like we are visitors to a museum of alien life and alien history rather than our own.  The world has changed THAT much over millions of years.  It takes my breath away each time I visit and whisks my imagination away to another place completely.  (Namely that of a Star Trek kind.)

What better place to visit with my long lost niece and nephew, brother and sister-in-law from down unda.  My eldest brother and his family decided to stay a bit longer which meant Isis got to wag school yesterday and spend it skipping (metaphorically) around the happiest, most coolest, awesomest place on earth!  The museum!

How do they make a mini tornado without bringing the place down?  (We wanted to touch it!  You can see it in Kiyomi’s face….‘if I touch it, will it rip off my hand…. or will I just get in big huge trouble…. hmm decisions, decisions…’)

family-ties-4

The tornado-in-a-box was INCREDIBLE!  We couldn’t stop staring at it and ‘wow’ing and ‘ah’ing.

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It is such a GREAT place!  For oldies and young-ins alike.  And the IMAX theatre rocks of course.

family-ties-3

All us oldies were there too, but only the kids seemed to draw my lens.  It was a great day.  Great food.  Great people.  Great museum.

And I hardly teased my sisters boyfriend at ALL at dinner down in Orem.  Lindey said I deserved and A- for extreme effort.  (A + I say!!)  My brother suggested that the only reason I’d been so quiet was because I had painful strings tied to my fingers and toes to remind me to keep my teasing mouth shut.  But, no, it was all my own amazing self control and discipline!  (Thank you very much!)  Even when he mentioned his father was running for congress as a Republican – my eye only twitched twice – TWICE I tell you!!  Pretty damn good if you ask me!

family-ties-5

Jaz xox

PS Oh and my nanowrimo word count is now 61,755 – woohoo!!!


1 Comment » Posted: November 21st, 2009 |  Author: jasmine  |  Tags:

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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:

look-what-I-woke-up-to

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.

for-shriners-hospital-for-childrennew-paints

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 :)

halloween-2009-c

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!”)

halloween-2009-bhalloween-2009

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:

break-the-mould


1 Comment » Posted: November 5th, 2009 |  Author: jasmine  |  Tags: , ,

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letter to little sis


letter-to-phoenixletter-to-sis


3 Comments » Posted: October 11th, 2009 |  Author: jasmine  | 

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the innocence of angels


angel-by-jasmine-bailey-barfuss

The Angels
May angels rest beside your door, 
May you hear their voices sing. 
May you feel their loving care for you, 
May you hear their peace bells ring. 
May angels always care for you, 
And not let you trip and fall, 
May they bear you up on angel’s wings, 
May they keep you standing tall. 
May they whisper wisdom in your ear, 
May they touch you when you need, 
May they remove from you each trace of fear, 
May they keep you from feeling greed. 
May they fill you with their presence, 
May they show you love untold, 
May they always stand beside you 
And make you ever bold. 
May they teach you what you need to know 
About life here and here-after. 
May they fill you always with their love 
And give you the gift of laughter.

-author unknown

angel-by-jasmine-bailey-barfussangel-by-jasmine-bailey-barfuss


3 Comments » Posted: October 8th, 2009 |  Author: jasmine  |  Tags: , , , ,

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Our Daily Journey Through The Unchartered Territory of Rare Disease


Living With Rigid Spine Muscular Dystrophy

Life can turn from this:

rigid-spine-muscular-dystrophy

To this:

rigid-spine-hospital-rsv

In the blink of an eye…

Our Current Medical Care Issues:

Since moving back to the US, we have had to make difficult decisions based on the cost-of-care, that has compromised both the short-term and long-term health of our two children.  Due to the inflated health insurance premiums we were paying – premiums that provided less than 5% of their daily healthcare needs – coupled with the providers expensive deductibles, co-pays and ‘out of pocket’ fees, major stress and worry for our future compounded the worry already felt in a home that has two children with a rare disorder.  The compromises we have had to make in the last year may have saved money initially, but ultimately, cost more down the road.  For example:  My three-year-old daughter was eligible for the RSV shots last winter because of the high risk of respiratory failure the virus posed to her.  Unfortunately, we had to literally turn the deliveryman away at the door upon discovering the cost was $3,300 for three shots.  Her deductable was almost as high, so even with insurance and having the shots ‘approved’, we would have had to pay the full amount ourselves.  My stomach churned at the thought of having to turn the shots down, as my son almost died of RSV when he was three.  Several weeks later, she was admitted to intensive care with Respiratory Failure and was ventilated for two and a half weeks.  The cost was almost her life, and a $100,000 hospital bill.

Our Previous Medical Care Issues:

There is no roadmap for the family or physicians where rare illnesses are concerned.

We very quickly became the doctor and nurse to our children.  We learned to fight for the care they need and suggest possible treatments because the doctors just don’t know what to do and what to expect.  As young, new parents, our days saw us writing the book on RSMD.   Figuring the disease out, alone, the hard way.  Imagine the worry of seeing a beautiful baby waste away without a clue as to why; Seeing his file put in the too-hard-basket; Living in a dark cloud of fear and worry because there are no answers why and no clue what was to come.

Multiple hospitalisations, traumatic resuscitations and ventilations – our lives became something we could never have imagined.  These beautiful children, with amazing talents and personalities, typical in every possible way other than their bodies refusal to work properly.

It took five years to find a diagnosis and even then, there were no research papers, doctors or specialists that could tell us that our children will most likely die before their prime, or will develop crippling scoliosis as they grow needing multiple spinal surgeries before they even hit their teens.  There are no roadmaps for us or for our doctors.  We have had to write it, map it out, from hard, sometimes near-death experience; through trial and error.   And more recently, through meeting a family who had all four children with the same disease.  I understand that this is the way of rare diseases.  But it is very difficult to live through.

My Hopes For The Future

I used to wonder if my children would be able to marry, have children, lead relatively normal lives as adults.  Even the doctor who knew most about this disease in the world couldn’t answer these questions for me.  I know now.  I know that they may not live long enough, or have the independence, or the strength.  They will hope for it and wish for it though, just like we all do.

I don’t think about this anymore.  Now my thoughts are consumed with how on earth we are going to pay the next hospital bill.  I fret over how we are supposed to pay for their tube-feed supplies when it costs more per day to feed them than the average middle class salary earns.  

I wish I didn’t have to think about this side of things, but it is the reality for us at the moment.  I would like to be thinking about loving them, caring for them, keeping them as healthy and as strong as possible.  I resent the amount of time trying to get them the healthcare they need has been taking me away from them.  I wish for less worry in life, for continued research about this disease and the gene affected and I wish to see them grow up happy and content in their own skins.

Jasmine xox

Rigid-Spine-Isis-Superman


3 Comments » Posted: September 29th, 2009 |  Author: jasmine  |  Tags: ,

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#3 – my best mirror picture


Here is my second answer to the photo interview for September - 

Q: Your best mirror shot.

A:  I know this is kind of cheating, but when I think of my best ever mirror shot, I don’t think of the vain shots I take in order to feel better about myself, to help me pretend I weigh 30kg’s less than I really do by using a wide angle lens on it’s side from a high angle….  (I don’t want to take one of those pictures for this – they are dishonest and vain, and I am sick of dishonesty and vanity.)

I think of this picture.  

It keeps jumping back into my mind, over and over, as I think about my ‘best mirror picture’.  So, this is the right answer for me, even though it’s not something I took specifically for this challenge.  It is an old photograph, and unfortunately long lost.  Mum searched her albums for me last night, but it’s little space in the album was empty (noooooo!)  Then I searched and searched here – thinking that I must have stole it at some point (which I probably did) and could find no trace of it here either (nooooooo!)  Luckily, it is seared into my memory forever.  

So I drew it.  

I-LOVE-THIS-PICTURE.  It is the happiest, funniest picture of my life.  This was back when I was cute and loving and adorable – before I changed into a jealous little snot that rubbed everyone the wrong way.  It was taken back before I turned one – maybe six months old?  It was when dad was going to BYU and we were living in a trailer park in Springville Utah (cool hey!)  Mum, dad, nathan and glenn jumped on a boat for an american adventure in 1976ish, and conceived me along the way (on the love boat, as we joke in our family – probably at Christmas hee hee)… (ew)

But anyways…

I love my dad sooooo much, I always have.  He is one of the best dad’s that ever lived and he played such a huge role in my life as father, a friend and a guidance councilor.  I have felt adrift and lost without him many times over the last six years, since the day he died of motor neuron disease.  

I wish I had more pictures of you dad.  He was like me, always behind the lens…

squishy-bum

This image is a beautiful memory I hold dear.  Even though I don’t have actual memories from that age, I do, because of photos like these.  I love it because we are both completely cracking up at ourselves in the mirror – you know, a real crack up with real joy attached.  And I also love it because my bum is sooooooo squishy and dimply!!!  (I actually don’t think my sketch did it justice)

I love you dad.

I miss you times infinity and beyond.

Love Jasmine

xox


5 Comments » Posted: September 2nd, 2009 |  Author: jasmine  |  Tags: ,

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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.

trust-your-crazy-ideas

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…?…

lifes-little-box-of-thoughts

(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…)


3 Comments » Posted: September 1st, 2009 |  Author: jasmine  |  Tags:

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#1: what is the first thing you see in the morning?


photo-scavenger-hunt-rules

So here is my #1: what is the first thing you see in the morning?

Now, if the question was, ‘what is the first thing you feel in the morning’, the answer would be completely different.  C-O-M-P-L-E-T-E-L-Y.  But that is a story for another day… if I ever gain the courage. 

*stomach churn*

But what I see, definitely helps what I feel.

So back to the topic at hand, the first thing I see every morning –  this is what I see.  Every morning.  Since November last year.  

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Each morning I reluctantly wake up and by no power of my own, look out the window beside my bed.

It’s automatic.

The view stretches into our huge rented back yard and what I see can tell me a lot about the day – but no matter what the day holds emotionally or climatically, this view is always beautiful.  Is it green outside?  Is it sunny?  Is it raining?  Is is glowing with snow?  Are the apples blossoming?  Will the squirrels come out from their hiding place?  Are those baby birds I hear?  Are there any new flowers?  Are the leaves budding? And light, it is so good just to see the light.

Always beautiful, without fail.

the-first-thing-i-see-in-the-morning

Hmm, now this had to be the easiest question in the photographic interview – so which one to tackle next???  Hmmm… Decisions, decisions…  any ideas?

I can’t wait to see what these guys do with their photographic interviews – join us, and post your links so we can see!

http://sh1ft.org/blog/

http://eternallymine.wordpress.com/

http://blog-of-nathan.blogspot.com/

I hope today is a good one for you all.

Jaz

xox


3 Comments » Posted: September 1st, 2009 |  Author: jasmine  |  Tags: , ,

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another beautiful day at bear lake


phoenix-at-bear-lake

I love you Phoenix.  I love how we love the same things and have so much fun together.

xox


2 Comments » Posted: August 29th, 2009 |  Author: jasmine  |  Tags:

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Collin Raye – what a legend


If you have ever wondered if nice guys actually exist, well, they do.  

I met one yesterday.  

Collin Raye, country singer, father, grandfather.

When he walked into the room his smile instantly lit the place up with bright sparkly bubbles of happiness.  This guy is amazing.  Every word that crossed his lips were laced with kindness, tolerance, appreciation and passion.  He is genuine, the real deal, a diamond in the rough, a rare breed.  Working on his music video did not feel like work at all and was quite possibly, the most fun I have ever had on a set.

collin-raye

Kudos to you Collin.  Thank you for letting me make you perdy and thank you for sharing your beautiful stories through your amazing music.  I have never been a lover of country, but guess what?  I just bought your new album, and I love it.

Jasmine

xox


1 Comment » Posted: August 28th, 2009 |  Author: jasmine  |  Tags:

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he was listening… i didn’t think anyone would ever listen…


cry-of-relief-over-obamas-press-conferenceI can’t stop crying.  This was the absolute last thing I was expecting from a politician in a position of power when I watched the President’s press conference from yesterday.  I reluctantly clicked the link, expecting the typical transparent excuses so often heard from the lips of politicians regarding real healthcare reform in America.  I have written letters to every congressman in the state of Utah and also to the President and had grown so discouraged by standard political response, I had to stop talking about healthcare change.  It was too painful to see and hear ignorance all around me.  It filled me with complete hopelessness feeling like I was one of the only ones who could see what was really happening with US healthcare.  I felt thoroughly discouraged.  I had to stop sharing the struggle that we face on a daily basis having sick children and living in America.  It is too real of a topic to us and until congress had walked in my shoes, I felt there would never be change.  

As I sat on the couch this afternoon, looking out the window and wondering how on earth we were going to make it here in the US with already more than $100,000 in medical debt [and having just received a facebook email from someone vehemently against 'becoming communist' (eyeball roll)], I noticed a message from Obama linked to his press conference of yesterday.  After 15 seconds I began balling and continued for the other 54 minutes.  And I almost didn’t watch it.  I was sure there would be no good news for us in there….. oh how I was wrong.  Thank you Mr. Obama.  Thank you for reading the letters we send you and for actually listening.  Thank you for being open minded enough to review the facts, not the fears.  Thank you for rising above the ‘Ignorant American’ stereotype.  Thank you for being smart enough to distinguish HMO propaganda from reality and for not buying into the Republican back lash.  Thank you for putting us ahead of your career – something very rare in politics despite it being the job description.  Thank you for lifting some of my despair.  Thank you…. for standing up for those of us who are too sick and too tired to have a strong voice.  Thank you thank you thank you thank you thank you… xox


3 Comments » Posted: July 23rd, 2009 |  Author: jasmine  |  Tags:

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having fun in the sun la la la la


bear-lake-3

Having fun in the sun!  So many fun things to do at Bear Lake!

bear-lake-2

Playing with family is so fun at Bear Lake!  And the ride through the canyon to get there is divine.

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Wildflowers coloured the mountains.

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Blue sky, beautiful flowers, aquamarine lake and a happy family – this has been the highlight of summer thus far :)

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Jasmine 

xox


2 Comments » Posted: July 17th, 2009 |  Author: jasmine  |  Tags:

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