Tara Maria - The Blog!

Hey everyone!!!

2009-08-22T14:57:00.002+10:00

!Hey!

This is Jade writing, Cassie, Dada and I are having a photo shoot for father/grandfather daughter day. This photo is going to be in the newspaper sometime this week I think. Cassie had her party today and it was super cool. We went to see band slam and it was sooooo funny and really the best movie I have ever seen. Then we went to intercity for a while. If you play and game depending on your score you get that many tickets which you can by things with. I got this green slime stuff that looked like green gooey water but it was actually this weird Gooey stuff. Tara and I have been playing with it madly since we got the slime.We got this whole packets of new clothes from our friends called Taylor and Rhianna. We are going to go to the Uthers house for dinner tonight with another one of our friends called Isla and Sasha.

Whew and Phew...

2009-07-26T23:13:00.013+10:00

Whew. It's been a crazy, wonderful, fabulous time...with a little scare in the middle of it all. But firstly - the marathon: Tara and friends ran amazingly! She didn't stop once!!! Just ran her little heart out for 2.25km. And got in 8 minutes faster than last year when she did it on her crutches AND a few seconds faster than Jade and Cas's previous record!!!!

So huge CONGRATULATIONS to little Tarakie and a majorly huge THANK YOU to all her friends and their parents and all those friends that Tara's never met who supported her. It couldn't have been a better experience.

You know we even owe a huge thank you to Qld Premier Anna Bligh. She mentioned in interviews that Tara was her hero. That is such a beautiful, huge thing for a person in her role to say about a little 9-year-old. And it's something that's so valuable and empowering for Tara to tuck up in her soul and carry with her thro' her journey in life. The Premier also very sweetly held Tara's hand all the way thro' their post-marathon interviews, alongside gorgeous best-job-in-the-world Ben.

The Premier, Ben and almost 1,000 other people all showed their support for sick kids by wearing Tara's red wrist bands (with the 'If I can, You Can' motto embossed on them). Pretty amazing!

And then just days later - Tara used the motto to learn to cycle without her trainer wheels! We laughed SO hard watching her tryna master it. She just couldn't trust her prosthetic leg enough to take her other leg off the ground - but eventually she got it! Her motto was "If I can, I can!!!" And to celebrate - the whole family cycled from Main Beach to Surfer's Paradise - sooooo gorgeous...but then it all went horribly wrong. We stopped for sushi on the grass banks - and the girls started throwing water on Tone - so like a typical dad he started chasing them around and, argh, Tara fell really badly - her prosthetic kind of twisted to the side and all her weight landed on her stump. She SCREAMED. It was awful, awful, awful.

And so last week she couldn't put on her prosthetic again. Was just on crutches or crawling around. So horrible. All of a sudden we were reminded of all the things she couldn't do on one leg. We thought she'd broken a bone - but a couple of x-rays and hospital visits later - and PHEW - all is good! SUCH a relief. So much to be grateful for! Just days before we'd been whining that it was gonna cost $800 to replace the foam around her leg (which is looking pretty torn and ugly since they cut the foam to lengthen the rod inside) - but after her fall, you just realise THANK GOODNESS she's normally well enough to wear a prosthetic, no matter how torn and ugly it looks. It gives her freedom! (Pic here actually has nothing to do with the fall - it's of Tara and Cassie with Richard & Bridge on Gold FM!)

So the doc gave the go-ahead for her to wear her prosthetic again on Friday (in fact - strongly recommended she put it back on because the leg quickly forgets how to walk with a prosthetic) - and yesterday she was already putting it into ice-skates! It was Katy's birthday - and Tara's first time on the ice. Soooo exciting. She loved it...and it was made soooo much easier by a lovely senior girl from St Hilda's who held her hand and whisked her around and around.

Kim sent Tara an amazing gift this month - Oscar Pistorius' book "Blade Runner" WITH a special personal message he's written inside the book for Tara. (He's the South African 'blade runner' who caused controversy at the last Olympics when he - as a double amputee - wanted to run in the Olympics with his super-fast Cheetah blades.) Tara just grinned HUGELY when she got the book and has been reading it so carefully. She keeps finding things she relates to.

And she also received some fantastic news from GAPbuster Worldwide, a company that's the world's leading customer experience agency. They've announced that they're "proud to be associated with the Tara Maria Fund in support of the Gold Coast Hospital and Tara's brave efforts in the face of adversity. Tara's strength and determination are a source of inspiration for all of us at GAPbuster Worldwide." So through various initiatives they're going to be raising funds with their staff and customers for the Fund - which will be distributed to Tara and other children in need. Isn't that amazing??? (To learn more about how GAPbuster Worldwide helps the Tara Maria Fund click here.)

Other news - Cas was voted Form Captain! Jadie got her first modelling job! I turned a year older! And Tony made us all laugh out loud when he collapsed against the fence just after the marathon and had to be asked to move on by the Emergency First Aid guys! (He was fine - just didn't wanna run a metre further than he needed to!)

Happy Week Everyone! And thank you to all those who've phoned or sent such beautiful messages - particularly Joe, Anna and Butterly Kissez (read their comments on the previous post) who read about Tara in this week's That's Life magazine. Every encouraging word you give Tara makes such a beautiful impact - so thank you.

Marathon Mayhem!

2009-07-04T18:51:00.002+10:00

The girls have packed more into the last month than I think Tone and I did during our entire childhoods! Their fundraising for the Gold Coast Hospital children's ward has been AMAZING - with the Paton girls joining them, and selling bands at a hospital BBQ, outside Australia Fair Cinemas, at the Convention Centre etc. And WOW - soooooo impressive to see them go up to strangers and sell their bands and their cause.

Tara's had to totally step up and be a real Junior Ambassador - talking to the media! She's had press, TV and radio interviews with the kindest journalists in the world. Too cute for words. Especially when, just like a kid, Tara says things like "I'm so proud of myself for being an inspiration." ARGH!

And the rest of the family went along with Tara last night to the Gold Coast Marathon Official Dinner. Absolutely fantastic. Their first real grown-up event! The three of them spent all afternoon getting ready - painting nails, brushing hair, painting nails again (many times! they kept smudging them) and putting on lippy...which was all made worthwhile when the MC announced they were the most glam there! And very exciting - they got to meet Ben of best-job-in-the-world fame (see pic above).

Tara had an appointment with Dr Pincus 2 weeks ago and he said how fab she's doing. Referring to her amputation, he said "sometimes you have to make a huge decision...and sometimes you make the right one".

Later on we went up to Rehab for a meeting...and met a gorgeous 10-year-old girl who has just had the lower part of her leg amputated. She honestly shone - just so beautiful inside and out. And today she sent Tara an email wishing her luck for the marathon tomorrow and saying "It was really nice meeting you. It is nice to know that there are other people out there in the world that have been through the same thing as me." Tara's definitely going to stay in touch.

Busy, busy now getting everyone ready for an early night (!) at Granny's tonight...so we can be up at dawn for the marathon. Tara's gonna be interviewed on the live web cam on www.goldcoastmarathon.com.au shortly after noon tomorrow (Aussie time) if you happen to be near a laptop.

No photos of June because we lost the camera! But we've got it back now...

Merry Month of May

2009-05-31T22:59:00.005+10:00

May's been very, very merry - but instead of going into details - here are some pics instead...

THE TWIN'S 9TH BIRTHDAY!

Had a fab day in the park with family & friends, as well as a big 'jol' with schoolfriends at Strike Bowling. Funniest moment - Tara's leg coming off in the wheelbarrow race...

CROSS COUNTRY

As Jade mentioned below - she made it into the Andrews' Cup (inter-school team) which was fantastic...except that the competition got rained out. Tara also did so well on the day - running the 1.5km without stopping once. And Cas was a real hero - running with a broken arm that she held the whole way AND she stopped halfway to help a friend.

TARA MET THE QUEENSLAND MINISTER OF HEALTH

The Minister, Mr Paul Lucas, came to Tara's school for a chat and photo ops to announce that Queensland Health is sponsoring the Junior Dash this year.

MOTHER'S DAY WALK

We all did the 4km Mother's Day Walk to raise funds for breast cancer research. Alec was a very supportive cousin to Tarakie!

TARA FEATURED ON MARATHON WEBSITE

Queensland Event's newsletter featured Tara as the Runner Profile and it's on the website too - if you click here and then scroll down to where there's a pic of her on crutches - you'll see the piece. (There's actually another little pic of her higher up too.)

TARA PAINTED 10 TOENAILS FOR THE FIRST TIME IN HER LIFE

OFFICIAL LAUNCH OF THE 2009 GOLD COAST MARATHON

The whole family and Tara's teacher were invited to the event - fantastic. Tara went up on stage and answered some questions, in her role as Junior Ambassador. Very sweet. Lots of TV cameras etc. The girls giggled lots and had heaps of fun posing with the Premier Anna Bligh - who yet again was so inspiring.

TARA TO RAISE MONEY FOR CHILDREN'S WARD

Tara's decided to raise money for the sick kids at the Gold Coast Hospital (where she stayed when she had the initial infection) and for a proper running leg for herself - and is gonna be selling red wrist bands inscribed with "If I can do it, you can do it" - www.GoGCKids.com. She's sent out a letter to all the girls at her school about it and has pre-recorded an interview on the local radio station about it. And coincidentally, Premier Anna Bligh mentioned in her speech at the Launch that when wakes up in the morning and it's too cold to run, she always thinks "if Tara can do it, I can do it" and she uses that as inspiration to get her up and running...so quite apt that those are similar to the words Tara chose to use on the band.

So that was some of the merry month of May! There were other things of course - like our wedding anniversary, Johnny Clegg concert etc. etc.

Hope you all had a fab month too! And am gonna make concerted effort to update the blog more than once a month in the future!!!

Jades Cross Country

2009-05-01T18:27:00.005+10:00

Hello, Jade speaking.

On the 24th of April it was our school cross country ages 8, 9, 10, 11 and 12. I am in the 9 years because I am turning nine in 1 day from today which is the 1st of May. I trained really hard to get in the top 20 if I could and if I did, I wanted to get in the top twenty. The cross country course goes all around the school and half of the oval. I came 20th last year...and this year i BEAT MY RECORD and came 7th and got a black ribbon. One of my best friends came 6th just before me. During the race, when I came to the tennis courts I just ran my fastest and was coming 20th but I speeded up and then I was coming 10th and finally got 7th so YAY. Being a part of the Andrews cup swimming and Andrews cup cross country training is lots of fun and it gives me a chance to represent my school. It is lots of fun training for the Andrews cup cross country. we run 5 kilometers and it goes across owen park which is the big humongous oval across to our school.

By Jade

Happy Birthday Stumpie Star!!

2009-04-13T22:14:00.010+10:00

We had a FAB birthday party for Stumpie Star - went to a chocolate bar restaurant at the Mirage - deliciously decadent. They put a little candle in the middle of Tara's choc fondue and we all sang for Stumpie. Can you believe it's been a whole year since Tara's amputation! Wow.

On Stumpie's birthday Tara happened to win a prize for her amazing progress in swimming. Such a great sign of how much her life has improved in one year.

As you can see in the pic - she's currently wearing a pretty thick sleeve around the top of her prosthetic - it's because she plays so much that the thinner ones were getting destroyed too quickly. It's funny coz now people will ask her what's wrong with her knee...and get a small surprise when they discover that the rest of the leg isn't quite real!

Other news - I by mistake bullied a photographer into taking a photo of the girls at their Sunday School play on Easter Friday - I thought he was the church photographer and saw he was leaving as we arrived so I did the whole "I don't think you got my girls yet" blah blah. Soooooo embarrassing - turns out he was from the Bullie (The Gold Coast Bulletin) - and apparently the girls featured in the paper yesterday...but we were away in Yamba with Micky Blewitt, Gav etc. - so the newsagent's gonna order in an old copy for us.

Yamba (a town that's like South Africa in the '70s) was fab - including brilliant rainforest walk during a major downpour!

Tara received another lovely letter from Queensland Premier Anna Bligh - after Tara had sent her a Good Luck card for the elections (Ms Bligh won). And Queensland Events phoned last week to discuss an event at the end of this month where they may need Tara to be present in her role as Junior Ambassador of the Gold Coast Marathon. The Premier will be there as well. Will keep you posted.

The girls are happy, lovely and very, very sweet. They even made Granny's bed when they stayed there the other night - without her even asking. Cas had a fantastic adventure in Sydney with her form for a couple of nights, learning about Aussie history.

Jadie was placed third in a local drama competition (how's that for increased confidence!) and a couple of Tara's pics have been chosen for a school Art thingie that's coming up.

Tomorrow Tara and I are off to Brissie for a check-up with the surgeon. She wrote him a card to say thanks for the op. Here's a transcript:

Dear Paul Pincus Thank you for looking after my leg so well. Everyone thinks my stumpy is one of the best stumps that they've ever seen! I really like my stumpy and I am really happy with my stump. I couldn't put on jeans before. I couldn't run fast and keep up with all my friends. I couldn't even play certain games that I loved. Thank you once again. I am so happy with my stumpy and now I can do all the stuff that my friends can do. I'm going in the marathon again this year, and in some other races too. Thanks so much. My stumpy means so much to me. Lots of love Tara xox

Soooo sweet. Hope everyone's well, well, well! Some extra Yamba shots below...

Our Little Tumbleweed

2009-02-27T09:53:00.015+10:00

Tara's been totally gorgeous the last few weeks (well she always is) - but she's just doing the cutest thing - she's discovered tumble turns (something she could never do before) - and so now she 'tumbles' everywhere - up the corridor to her bedroom and across beds, floors, lawns and the beach. She's like the happiest tumbleweed you've ever seen.

Sometimes you forget she's even had an amputation - and you think she's forgotten too - and then she'll say something...like we were reading her notes about the Olympics last year and she saw again how the torch was lit on the 25th of March - and she immediately said "oh, wow - that's the same day I had my operation". So it's there - imprinted on her mind. And the other day she found the tape recorder with the conversation the whole family had before her op - and she cuddled up on the daybed outside and listened to the whole thing again.

Last week also - the girls had a swimming carnival and 2 days before she said "to be honest, I'm worried I'm going to be left behind after the races when I'm putting my leg back on - and the other girls will go back to the tents without me". Of course it turned out the school had everything beautifully organised with someone to accompany Tara at all times and hold her leg while she swam etc. But it was sweet that she was concerned coz sometimes she just gets on with it so well that you forget to ask if she's doing okay. (She did fab in the swimming races btw - and came first in her freestyle race! That's her with the blue cap waving at the camera before the race. )

We keep needing replacement parts for her leg because she plays like any other 8-year-old (LOVES the bars on the school playground) - but instead of getting cuts and bruises that can heal - she kinda damages her leg - and then it stops working so well and it falls off when she's running! Not a great situation!

Cas and Jadie are gorgeous too. Jadie's been invited to possibly represent the school in breaststroke - so she's off to a carnival on Saturday. And Cas is LOVING all the new stuff she's learning at school. Did you know there's a type of fly (gall midge fly) that's born inside it's mother's body? Well - when the babies are born, they eat Mum's insides...and within 2 days they've devoured her whole body?! Thanks Cas for that info!

Jadie was voted Class Student Representative for the year which is a big responsibility and fantastic for her. She was very nervous to try out for the position - and almost didn't - but at the last second she thought "I have to do this to help my confidence" - and hey presto, she made a speech along with some other brave girls, and Jadie won the job. She's loving it - having to help organise events like selling ice-lollies to help raise money for the fire victims. (All the girls at school also had a Free Dress Day and were asked to donate $1 or $2 for the fire victims - Tara donated $10 of her own saved-up pocket money - which was just so, so sweet and she totally inspired Cas who also then donated $10 - Jadie managed $5 - and they said they didn't just want the money to go to the children, but to the grown-ups too "because grown-ups are also people and they also lost a lot in the fires".)

Tara was voted Form Captain & is taking her role very seriously and giving stars to girls who behave well (even Jadie got one yesterday). Cas tried out for the same positions in her class and didn't get in - but she's got such a great attitude about how the girls who were voted in deserve it just as much and what a great contribution they'll make.

Tone's doing well - tryna lose a little of that weight he gained with his mum's fab cooking over the past 2 months - so he's out power-walking, and surfing when it's dark and the sharks are hungry. Argh!

And Granny Paula's just officially become an Australian Permanent Resident! Very exciting!

Other than that - the usual parties, beach, tennis etc... Happy Weekend everyone! Happy Belated Birthday Filipa, and HUGE thoughts and hugs Kim!

New Year Catch Up

2009-01-28T08:35:00.002+10:00

Happy (belated) New Year to everyone! Hope you all had a fab festive season and have a divine 2009! And let's hope we all get to see each other this year!

The last couple of months holiday have been soooo busy but also gorgeous. The girls have had almost daily visits with their grandparents (and we've had lots of delicious dinners c/o YiaYia!).

So lots of family stuff, plus all the usual parties, beach, pool, ice-skating, movies and sleepovers with their mates.

We had a fabulous camping trip with the cousins to Broken Head - sooooo beautiful. The kids climbed trees, walked along cliffs and explored caves - the whole Enid Blyton thing...except for the wild turkeys that kept waking us up and the humungous Joanna the Goanna who took a daily stroll through the tents...

YiaYia, Bapou and Granny came thro' for a day for YiaYia's birthday - lovely bbq and afternoon in Byron Bay where we were spoilt with dolphins, turtles and even a lovely harmless snake.

Tara was amazing. Climbing the tree obviously wasn't as easy for her - you had to keep stepping over branches where balancing on each leg was vital - but she persevered (even when we told her she could be proud of what she'd already accomplished) - she was just so determined to do what the others could do - and finally - about 24 hours later - she could reach the most precarious parts of the tree, parts that even courageous Cas was scared to go to.

Fab parenting tip: look away. Also had to look away when Tone took the girls surfing. Argh! Very cute tho' - and Tara again was just so adamant that she could do it too - so she did.

Her new leg hasn't quite been a dream yet. Part of it broke before we even left - so luckily she still had old LouLou altho' it's too short for her now. So cute to see how she's grown since having two legs - so it seems exercise really does help you grow! The broken part of new LouLou has now been replaced so hopefully it'll be okay now. Hold thumbs/cross fingers.

So crazy - we had to go back to the prosthetist last week to get a microchip put into LouLou - apparently Queensland government insist on it - they have such a shortage of funds - and then they waste money on stuff like this.

Jadie's confidence has improved SO much - but she still won't let us stop praying for her confidence because she says we spent years praying for Tara's leg - so she's owed at least a few more months. She was a little star at her modelling graduation show - which was fab because Granny, YiaYia, Bapou and Janet were also all there to cheer her on. You should've seen after the show - Jadie, Cas and Tara jumped up on the catwalk and were doing their own show - and then suddenly Jadie started dancing across the stage, doing faux ballet and really just performing with absolute abandon - and you could tell that she was physically feeling the joy and freedom of what she can do if she doesn't let shyness get in her way.

Cas is lovely and gorgeous (hmmm, feels like my word for today) and just keen to save the world and save the environment and win at rummy. She nearly went on a fantastic NIDA acting course...but she broke my $4,000 laptop with her ipod (forcing the earphone thingie into the wrong place) - so all theatrics remained at home.

There's been lots more - a lovely night with twins Lucy and Jessica who raised money for Tara's leg earlier this year - such fun for our girls to really get to know them coz they were babies when we were neighbours in Sydney. And from their holiday apartment - we watched the most amazing mini-cyclone - with chairs flung into the pool. We've also had a brilliant weekend down at Yamba with Mickey and Michelle who've just moved over from SA; Tone's been to Adelaide with his folks to visit relatives and eat fresh food from their garden and more, more, more.

Not sure if you saw the lovely message left for Tara on the last blog entry from a little girl called Aijana (10). She wrote "my grandmother read about you in a magazine. I also have CP of the Tibia and also see Dr Pincus. We have been reading through your blog over the past month or so and you have inspired me to write one for myself. We also have other things in common, like dancing and singing and I also love puppies like you. I have a Cavalier King Charles Spaniel named Dixie and she had puppies in August this year. You and your family look like you have lots of fun. Keep smiling!"

Aijana - if you're reading this - Tara just LOVED your message. Thank you, and she looks forward to meeting you one day.

OK. That's the big catch-up caught up.

Again - happy, happy 2009 to everyone! (Pic of us on the beach on New Year's Eve - our first grown-ups only NY for YEARS!)

Happy Holidays

2008-12-08T11:25:00.000+10:00

Wow. Can't believe how time flies. So much has happened since last blog entry.

Father Daughter Day at school was gorgeous. Tone couldn't believe how many fathers turned up. Good on the dads! While Tone was in Cassie's class, the twins were 'adopted' by friends' fathers; and coincidentally Tara's adopted dad has actually had an Illizarov Frame himself - he needed it from racing motorbikes - and is very good friends with Tara's surgeon. Small world.

And a lovely lady phoned us from north Queensland - because her daughter had seen the photo of Tara in the New Idea and said "look Mummy, she's my friend - she'd understand me"...because her daughter also has pseudoarthrosis and has had ops and different kinds of braces since she was a child. When we told Tara she just BEAMED - she knows exactly what the little girl means about "she'd understand me". We're hoping Tara can meet her in Brisbane next time they're at the hospital. She's 10 now and has been advised not to jump or exercise for fear of breaking her bones again. So Tara's very lucky with her newfound freedom!

Altho'...the new deluxe leg has not been as smooth sailing as we hoped. We've been back and forth for appointments, trying to get it fitted correctly. It pinches her, gives her sores etc. We've had to ditch the silicon in favour of another material because her skin didn't react well to it, but I think we're almost, almost there. She cried momentarily yesterday because she was frustrated with part of it that won't stretch properly - and you know when she cries, that it must be bad coz she always tries sooooo hard to be positive. In fact one of the mums at school was saying that we always go on about how supportive everyone's been - but that we forget that it's Tara who made it so easy for people to be supportive because she never played victim or whinged.

On Friday Tone and Tara went to Brisbane to have the leg spray-painted (like a car!) to match her other leg as closely as possible. That also helps with waterproofing it - but we've decided we don't want her swimming with the same leg - it may just deteriorate too quickly...so we're going to get her old LouLou transformed into SplashyLou instead! Can't wait. We just can't watch her battling to hop in the ocean and not being able to play on the shore with her sisters and friends anymore - so yesterday we actually let her go in the sea with old Loulou - and it was fabulous! She body-surfed, ducked under and over waves and had a BLAST!

So funny - remember the charity - Montrose - who called to reject us? Well they called again to reject us again - they forgot they'd already done the deed! Tony also spoke to Dr Slaughter at Royal Children's - and he's given the all-clear that Tara does not have the pin stuck near her heart. Whew! Thanks for those prayers!

And (Queensland Premier) Anna Bligh sent Tara a little doll called Kelly, whose legs are amputated, similar to the doll she received in hospital. The Premier also sent such a lovely note - isn't that divine that she thought of Tara straight away! And Tara - after much begging from Jadie - is letting Jadie share Kelly with her.

School's finished - won't bore you with details but the girls got lots of certificates for great effort and Jadie got a medal for her academic achievement, plus she's been promoted into the mini swim squad.

Their nativity plays were gorgeous - Cassie played a Granny soooooo well - and it seemed to make her wiser - she came home with great observations on life - including that our bodies are on loan to us like DVDs from God's video shop, so we have to look after them especially well.

Janet arrived from London just in time to watch the twins' performance. And brought with her the most exquisite lavender from Christine's garden in Antibes. Merci beaucoup! And then my mum whisked her off to Noosa and Lady Elliot Island where they've been watching turtles laying eggs.

YiaYia and Bapou have also arrived from South Africa for a couple of months - so the girls have had HEAPS of fun playing with them everyday and forcing Bapou to swim with them. Plus there've been movie premiers (High School Musical 3), Christmas parties, ice-skating and all the usual stuff. (And the unusual - like looking at the smiley crescent moon with Venus & Jupiter sparkling nearby every evening last week.)

Altho' this blog has been going for less than a year - so much has happened in the lives of those of you who've supported Tara in her journey. Lizzie lost her friend, Pierre lost his dad, Zigs and Christian got married, Jason & Lisa had a baby, Annie got breast cancer, Sian started a new practice, Craig lost his brother, Tia moved to a new country, Jaspar got a fantastic new machine that lets him communicate, Ted wrote a new book...and Nick and Staci's little Toni - the cutest 4-year-old you could ever meet - has just been diagnosed with Wilm's Tumour. The good news is it's contained in one kidney and after some chemo, his kidney will be removed and he'll get to live a totally normal fantastic life. But for now - we know how difficult their journey must seem - and so we're all praying for a speedy recovery and for lots of strength for Nick and Stace as they hold their little son's hand while he goes through this new chapter in his life that we know will be filled with lots and lots of love.

Lots of love to everyone! And enjoy, enjoy the holidays.

New Idea and New Legs

2008-11-13T14:09:00.014+10:00

I keep meaning to update but we've lost one of the cameras that had the photos on I was gonna upload. Blah.

Next week we'll be able to post some super-professional ones from Taefi Photography - who took photos of Tara and family for New Idea mag. And it's out in stores RIGHT NOW! So if you're in Australia - take a look at page 60.

Jadie's tamagotchi crisis that she wrote about a few weeks ago has been solved! Jason found a lovely tama in Chamonix and sent it her way! Thank you! She's ECSTATIC!

Tara also had her x-ray - and so far it all looks good (and she took it to Show & Tell). Thanks sooooooo much for prayers - always appreciated! We've just gotta wait for Dr Slaughter (!) at the Royal Children's to check it out and confirm all's okay.

And her prosthetist phoned yesterday to say her new leg should be ready next Thursday. We had a fitting (well, Tara had the fitting) last week and a few adjustments were needed.

It's amazing how FAST things are changing in the prosthetic world. When we first saw them a few months ago, the latest greatest legs were the ones with a pin on a sleeve you put over your upper leg, and then clipped into the pretend leg. But now it's all hydraulic suction kinda gear. No pin required.

Tara takes a few steps...and squeaks a bit as air leaves the leg - and then once it's all gone, the leg is tightly secured.

As you can see from the pics here - the silicon sleeve is rolled on (far left) and then the prosthetic leg is attached - here there's still the ugly pole showing thro' coz they're adjusting height etc. - they'll put a cover over it when they've finished & then we need to go to Brisbane to get it spray-painted as close to her leg colour as possible. No more tights (or stockings as they say here).

We had another photo shoot last week where it would've been so fab to have had Tara's water leg - running on the beach. She tried to run with current LouLou on the sand, but it kept coming off; and she couldn't go near the water. Blah. She's also finding the socks are becoming too itchy (with summer). New leg doesn't have socks - has silicon. Some say it makes you sweat more - others say that after wearing a silicon sleeve for a while your stump stops sweating - so we're aiming for that one. Tara's phantom tickles are now at the end of her stump - isn't that amazing - they've moved from where her toes used to be to just below her knee (so that's where her head now tells her her ticklish toes are).

Tara and Jadie's school camp was brilliant - they loved it - and the divine Mrs D said that she wishes all the kids could be as independent as Tara. She had no hassles with her leg - altho' Jadie did come back with a mega bruise and burst blood vessel - so she's the one who had to go to the doctor.

Cas went with Dylan and Granny for a long family walk up at Springbrook (in the rainforest with waterfalls) - very excited coz she saw a snake and lots of other Aussie animals.

At school they've all been having heaps of fun - they designed and made hats for Melbourne Cup Day - Tara got into the finals and was desperately annoyed to not win...but she was convinced she'd win the poster for best Year 3 kid in Acacia - but she lost out to none other than her own twin sister! Can you believe it - out of all those girls - it had to be Jade who won - which was actually better I think coz Tara was at least happy for her...and now more determined to win next year.

Yesterday Tone and I watched them do a beautiful little play at chapel - all about how important it is to be a good friend and help others, and treat a friendship like you do a plant - nurture and water it. They were soooooo good and cute and adorable. Tomorrow they've all gotta be at school early for a breakfast bbq with the dads! Lucky Tone. I can sleep in!

Otherwise - lots of the usual stuff - beach, tennis, movies, ice-skating, dinners at Granny, fab Halloween night with the cousins, sleepovers with friends etc.

The girls are counting the sleeps till YiaYia and Bapou arrive in about 10 days' time. Very excited.

And big prayers and lots of love for Annie this week.

Rollerskates, monsters and a wire

2008-10-20T19:52:00.009+10:00

Hello! Been the usual busy time with some wonderful magic moments brought to us care of Tara and her gorgeous sisters! Like the afternoon that we were picking up Cassie's camp photos - and a mentally-challenged man chatted away to us. Afterwards Tara said "I feel so sad for people who have something wrong with them." And then she burst out laughing and said "oooh, I've got something wrong with me too...but I don't want anyone to feel sad for me. I'm very happy!" And the conversation evolved over the next few days to the point where she realised that, just like her, most other people with issues are probably happy too and don't want anyone to feel sad for them. And then she pointed out that actually there is no division between people with something wrong with them and those without - because "everyone has something wrong with them, you just can't always see it."

She also had a great conversation about the kids at her old Australian school who "didn't like me and didn't wanna play with me because of my leg" - but she says it all in such a beautiful matter-of-fact way - you can see she didn't take what they thought of her onboard at all - she left their thoughts with them.

At school, the fab and lovely Mrs Donohue asked the class to write a letter about anything that they are currently concerned about. Tara wrote that she actually had no problems of any concern...but that when her dad was a kid he used to be scared of monsters and had to jump from his door onto the bed!

And her tenacity continues. One evening we noticed that LouLou may just fit into Cassie's old rollerskates. And the next night, lo and behold, Tara came rollerskating down the corridor in her PJs - she'd secretly gone and put them on. Scary but fab! And she's still tryna master tennis (with the most patient dad in the world)!

Other news - I was invited to do a speech about South Africa for the local Rotary Club and sooooo would've normally said 'no thanks' - but after the experiences this year with these 3 little girls - Cassie with her French speech, Tara with her speech to the Premier, and Jadie mastering her Evonne Goolagong speech - I was inspired by them to also lift my level! And - with a HUGE thanks to Kim S. and Melanie W. (and Alex & Stu for their Aussie support!) - I managed to pull it off. Whew! Could NOT have done it without you guys! The girls were SO excited with the certificate I received afterwards - just like theirs.

We had a lovely surprise this weekend when Tara's other Godmother - Phil - came up from Melbourne (pictured here...with sunnies as big as Tara's!) - fabalicious. And most exciting news is that Tara may get her new leg tomorrow!!!!! Altho' we won't let her start wearing it till next week - coz she and Jadie have an overnight school camp this week, so best to keep it simple with old LouLou. The school's been amazing at ensuring the facilities will be suitable for Tarakie - a chair in the shower (so she's not sitting on the floor like she does at home) etc etc. So funny actually coz one of the help groups - Montrose or something - called us to enquire about Tara. They're a group who assist people with amputations etc. Anyway - after all the questions - they called us back 2 days later to say they will not be offering any assistance to Tara coz she's "not bad enough" - and it was so weird coz it still feels like you're being rejected...even tho' of course you're so glad that Tara's considered so normal that she doesn't need help!

Still no news about whether Tara's one of the kids with a wire left near her heart. Frustrating. Many phone calls. But still no answers. Oh dear - in the 15 minutes since I typed this - we've had a phone call from the Brisbane Royal Children's to say Tara did have that particular catheter in her arm. So she'll have to be x-rayed to see if she has the wire lodged inside her BUT the good news is that so far the children from Royal Children have been okay. Still not nice tho'. You get that nervous feeling. Argh! Small prayers please! Will keep you posted...if she does have it tho', it should be ok - just a small op to remove it. Happy Week Everyone!

Welcome Home LeggieLoo Quilt

2008-10-11T22:25:00.007+10:00

YAY! Gela came down from Brisbane and brought Tara's LeggieLoo quilt, which her and her friend Catherine have finished off BEAUTIFULLY...even tho' Gela was meant to be recuperating in bed from her op! The LOVE and dedication that's gone into the quilt are just extraordinary - especially since Catherine's never even met Tara...and Tara only met Gela properly the night before her operation (Gela had already been a brilliant support when Tara was a baby having a million ops - but Tara had no memory of those days...thank goodness!) That night before Tara's amputation, Gela turned what could've been a nerve-wracking evening into the most fun and giggles the girls had ever had - she painted Tara's left foot so that she could leave colourful prints of Leggie Loo all over a piece of canvas material. The girls also wrote messages, and Big Foot (Tara's right foot) got a look in too. Tara kept the canvas tucked around her during the week in hospital, like a security blanket...and then we gave it back to Gela to magically transform it into a quilt that tells the story of Tara's journey this year. The girls fought over who was allowed to sleep with it, they just love it so much. And Tara took it to show-and-tell on Friday.

So lovely re-reading the messages the girls wrote to Leggie Loo like Tara's one saying "I love you. I will miss you a lot. Thank you for teaching me things. You are lovely. bye!!!! Love Tara".

One of Jadie's messages read:

To Leggie Loo
It was the last day of seeing you. It was very tough for you I think.
Love Jade!

Cassie wrote:

To Leggie Loo
We will all miss you! I love you so much!
love Cass xox

And one of them wrote "Leggie Loo was a great friend".

They're all loving LouLou tho'...even tho' she does occasionally (hmmm...frequently) stand on her sisters' feet by mistake!

First week back at school was fab. Jadie's loving her new role and Cassie went to New South Wales for a school camp for a few days - learning to canoe and do all kinds of fun stuff in the lake and the ocean. Had a LOVELY evening with Neal who was up on business from Sydney...and brought Gela, the quilt, flowers (thank you Gussy!) and truckloads of chocolate with him (which Tara also mentioned in her Show & Tell).

Shame - Tara shed a few tears because Jadie's been invited to play at a friend's house tomorrow and she hasn't - but just feels right for Jadie to get her first play on her own (Tara's had a few already). Jadie loved her first modelling lesson this morning and we had yummy dinner and bingo at Granny's tonight.

Last night the Baxters came for a sleepover and we adults went out for dinner in Tedder Avenue - and spotted Dicko (from Australian Idol) and Nigel (from the US So You Think You Can Dance) - which was kinda fun coz not much normally happening in our neck of the woods!

Tony happened to buy the newspaper today...and there was an article asking parents whose children have had operations in the last year to please contact this Hotline. And blah - turns out that some children have been left with wire lodged near to their hearts from the catheter that was inserted in their arm to give them antibiotics and other drugs. It's not life-threatening but requires an op to remove it. Only 3 hospitals in Queensland have been affected...and the Royal Brisbane, where Tara was, is one of them. Argh! Hopefully Tara's not one of the kids that had this particular catheter (altho' of course we feel for the parents of anyone whose child did use it). But they'll only let us know next week. Yikes. It's never over.

Home for the holidays

2008-10-06T22:01:00.009+10:00

Oh sob - it's back to school tomorrow...which means Tone and I have to wake up early. Argh! But very exciting for Jadie - she could barely sleep tonight, so excited about being form captain.

We've had a fab holiday tho' - here at home - with a constant stream of gorgeous friends from around Australia. Tone and Phil and all their childen have been up from Melbourne for the past 10 days. Tone (Wits) and I both noticed how not one person at their resort's swimming pool actually stopped to stare at Tara - even tho' she was hopping around the pool and diving in sans her prosthetic leg. I think she was just acting so 'normal' and so full of fun that nobody had a chance to even see anything out of the ordinary.

There have been a few moments tho' when the kids have played games - and the boys aren't as keen as the girls to have Tara on their side...coz she's a little slower. But the girls have so made up for it that I don't think Tara's really noticed. And if she has - it's just more impetus to learn to run faster.

She's been learning to ride her new bicycle (which was donated to her by a very kind cycling shop owner in Melbourne). And even tho' she fell off twice - she got right back on it again. All 3 girls are also learning to play squash and, as Jadie mentioned in her blog entry (where she had a go at Cassie!), they also had daily swimming lessons during the holidays. Tara's stroke is great - she was placed in a higher group than even gorgeous Cas! (Very funny & soooo fab to see Cas laugh at herself. Nothing like your younger one-legged sister being a better swimmer than you!)

Donna & Fraser came for a sleepover; and Steve & Sian, Zoe & Portia and friends also stopped in from Noosa. All divine. And Tara just loved playing tennis with them. Love her get-go attitude. She didn't think twice about playing with the older girls, even tho' she's only just begun learning tennis and it's a rare miracle when that ball gets over the net.

We had another media interview - this time over yummy milkshakes at Bahia - for the Queensland Events magazine which comes out next year.

And most importantly, Tara got a cast taken for her next leg!!! Hopefully she'll be in the new leg by the end of October. Wow! She had to go in and get the current leg fixed a little - was hurting her around her knee so she couldn't wear it. Blah.

Saw such a funny interview on telly last night with Andy Hills - the Aussie comedian who has an amputated foot. He was talking about doing the Leeds show (UK) - where he let his prosthetic leg do some crowd-surfing. It is funny how people do react to seeing a prosthetic leg - even on the beach with Tara - people are less likely to stare at her, as to stare with huge grins on their faces at LouLou, propped in the sand. It's a novelty people seem to love. Tone and Phil's little twins have just loved stroking Tara's stump - very loving.

OK - must get ready for school tomorrow! Hope you all have a fab week!

Naughty Cassie

2008-10-03T09:44:00.004+10:00

Hi Tara,

I hope you're having lots of fun on holidays with the Wits and all the other people. I am doing a modeling cause in 12 days and wish you could come as well. I've been sick and I still am a little bit sick and I really hope you don't get sick now in the middle of the holidays. On Wednesday the 24th of September the Patons came and we were doing lots of fun games to win prizes and I won a game and picked a prize from the lucky dip but a few minutes later it broke so I got another one which was a tamagotchi. In the afternoon we all set off to swimming. I was in the pool when Cassie was playing with MY tamagotchi and Tara had just got out of the pool. Dad asked Cassie if she could give Tara her clothes in the shower which was down the steps and to the right. Cassie was holding her clothes and my tamagotchi and she dropped it somewhere and now it's lost. Hopefully Cassie's learnt not to use other people's things without asking.

Love Jade

Le Weekend

2008-09-08T16:08:00.008+10:00

Weekend was lovely. St Hilda's fete - girls played up a storm on the rides. Cas did rock climbing, the twins went on the cobra (SCARY!), Granny spoilt them and Tone & I visited the Champagne & Oyster Bar!

Tara wore her brand new pink & silver runners/takkies (from Queensland Events). And WOW - they made her wanna fly - so "light and bouncy" she said (great ad for asics!). Like magic shoes. We went to Aus Fair and she SPRINTED up and down the aisles. And when we got home she dragged Tony out to run fast around the block. Her little lungs were aching - in that fab healthy way - another first for her! And it was such great timing to then watch the Paralympic girls on 60 Minutes - really inspiring for Tara - that dream of one day being able to represent Australia. Now she wants to be "an artist and a paralympian".

Also had a sporty morning yesterday (Sunday) with the Patons - playing mini-Olympics on the beach....including a hopping race. This all probably sounds so bland - but such a breakthrough for Tara who used to have to be a spectactor instead of a very excited participant! Very inspiring. It was cute tho' when we were walking to the beach - LouLou kept coming undone and she said "how do you think you would like it if your leg kept falling off and nobody would stop for you to put it back on" (said like it's the most normal thing).

So we can't wait for the 15th - to start the process of getting her next James Bond-ish leg that'll be a lot more secure and she can run without worrying it'll disappear from beneath her!

Biggest difference so far since Tara's amputation is the absolute FREEDOM the rest of us now have to enjoy ourselves around Tara. Before, her leg was so fragile that you were too scared to bump her and hurt her (or have her killer brace hurt you) - whereas now she can wrestle with Tone like a pitbull & LOVES it - and there's no worries that her leg's gonna get hurt! YAY!

Oh dear. I forgot to publish this post - so it's now a whole week later. HAPPY BIRTHDAY CAM CAM! And SPEEDY SPEEDY RECOVERY beautiful Gela! And big thoughts to Paul and my dad this last week. The girls wrote Paul the loveliest notes on full moon night & we went out for the most divine ice-creams (coz there aren't any crepes in Tedder Ave).

The 15th went fab! Rehab all happy with Tara's progress and we can now move on to the next leg. We also don't have to bandage her stump every night anymore - but after over 6 months of whingeing about it, can you believe we're now a little heartsore to let go of the tradition?! Tara even let Tony do it this week for the first time ever.

Great news - Jadie's been elected Form Captain for next term! She's soooo excited. All 3 got Effort 1 ratings for all their subjects this term - they really, really worked hard so they felt so good & said it was their best term ever. Cas got a certificate for her Shakespeare speech and although the twins didn't make it into the finals, Tara says that "Shakespeare is my FAVOURITE language!"

Queensland Health and St Hilda's have continued being amazing - they arranged to walk around the school with Tara to check on the level of safety (and all 3 girls - who are blind to the fact that Tara's in any way disadvantaged - asked why Tara specifically had been chosen to do this and not one of them!).

A HUGE thank you to Ginette, Hugh, Lucy and Jessica - WOW guys! We were blown away. Like we've said before to every kind soul who has taken part in Tara's journey - it's not just what you've physically now given Tara, but how much your care and generosity of spirit has been such a support to the whole family and helped fill up that reservoir of love that Tara will draw on for the rest of her life.

HOLIDAYS now...so we can sleep in for the next couple of weeks! Yay! Happy Weekend Everyone!!!

Rainforests, Man Flu & a Hot Mag!

2008-09-05T23:10:00.012+10:00

Yikes - there's been quite a bit going on - mainly all 3 girls being sick, sick, sick - but also some exciting stuff! We had a gorgeous picnic with the cousins a couple of Sundays ago up at Mount Tamborine (just near here) with a divine walk in the rainforest afterwards. Seriously - if Tara can handle that walk - which is filled with potholes, stones and rugged rocks - she can handle anything! And she did! She was one of the fastest - racing ahead and leaving us adults in the dust. I think it's just so exciting for her to be able to explore with the other kids instead of always being the one lagging behind saying "please wait for me".

When we got home Jadie had a TINY reddish dot on her face - which we presumed was from the walk and that a branch had nicked her. Then she was sick for the next few days - but since Tara and Cassie were too - we didn't think much of it EXCEPT that the dot on her face was growing bigger and bigger! By Thursday it had sort of ballooned from the size of a dot to the size of a jellytot - so we went to the doctor - and turned out it was a tick that had got its jaws into her and was sucking all her blood out! Argh!

Poor Cas was sick as a dog on her birthday - couldn't even talk till the evening. BUT we made up for it with a delayed birthday party this last weekend - taking 17 of her closest friends to movies and sushi. (Scary!) On the sick front - Tone thought he was having a mild heart attack two nights ago and rushed himself to the emergency doctor - but turns out he too is getting the flu. (And is just a typical guy with Man Flu!)

Had a great couple of days down in New South Wales with Gav and family at an old beach house in Evan's Head. Tara was so sweet. We were at the skateboarding park and she wanted to eat a chocolate she'd been saving - but I said she had to give everyone else a little bite first. So everyone took a nibble, except Alec who ate the whole thing. So I said to Tara "are you okay?" and she said "yes, at first it was hard because my face went into the wrong position so I had to move it around to not show that I was a bit upset".

Apart from her few days sick in bed (and reading NON-stop to us coz she can't bear to be alone), Tara's been having a fantastic time with LouLou. I just can't express enough what freedom she now has. Like tonight she was excitedly telling us all about the stuff she did in HPE today - which she never used to be able to do before. She was also in the finals of a talent concert (singing Maybe from Annie with her friend Eva), and did a project on an Aboriginal artist Ginger Riley which seems to have reignited her passion for art - she's been consumed by her art pad, sketching all kinds of scenes.

Tone and I are doing well (apart from his forthcoming flu of course) - had a fab time with friends up from Melbourne last weekend; dinner and movies (actually take-away dinner smuggled into the movies) with Alex & Stuart last night & a big luncheon thing with some school folk that started at midday and ended after 10pm! Love those.

And Tara, Cas and Jadie added a limo-ride (for a friends' birthday at the Outback Show) to their list of 'firsts'.

Thank you to EVERYONE who has poured love and attention into Jadie - amazing results. An A in presenting her project which she had thought she'd never be able to do & deciding to enter a Shakespeare speech contest that she normally would've run from! And huge thanks to Anita who's going to dedicate her next book to Jadie! It's so beautiful to see Jadie believing in herself again. And she's stretching herself again - instead of giving up without trying.

We had a visit with Dr Pincus on Tuesday - and he's VERY happy with Tara's progress!!!! We don't have to see him again for 6 months. And they've slotted us in to see the rehab people on the 15th - which is when we'll be able to get the ball rolling for Tara to get better legs! (It's also Paul's birthday...)

And the last bit of exciting news - a national magazine is doing a piece on Tara and her role as Junior Ambassador for the Gold Coast Marathon! I don't wanna say the mag's name till it comes out - will keep you posted. Journalist was divine - sooooo interesting - he used to work in Fleet Street (London) in the late '60s when it was at its best! He and a lovely photographer came around on Monday and took photos of all 3 girls - HUGEST fun for them!

Paralympics starts tomorrow! Tone and I went to the Paralympic Games back in 2000 in Sydney - just three months after the twins were born - when we were so worried, and had no idea what the future would hold for Tara (and us) except that we were "in for the long haul" (doc's words). So it's really exciting to be at a place now where we know that if she really, really wanted - it's a dream she could make happen for herself. Zigs told us about George Eyser - an American gymnast who won gold at the 1904 Olympic Games - with a wooden leg! How's that for not letting small things get in the way of your dreams?!

St Hilda's Fete tomorrow and Father's Day on Sunday. And if you're in Australia, try watch 60 Minutes on Sunday to see one of the Aussie girls who's gonna be at the Paralympics (thanks Ginette). Happy Weekend Everyone! And Filipa - that is FANTASTIC news in your last comment!!!!!! (A couple of extra Premier Anna Bligh pics included today that we didn't have last time.)

Anna Bligh Day!

2008-08-20T23:28:00.016+10:00

Sorry - it took us (Tony!) a little while to scan the article in The Gold Coast Bulletin - but here it is - Tara with Premier Anna Bligh!

SUCH a fantastic day! One that'll be etched in their memories forever...and will inspire them I'm sure. It could not have been better - on all fronts. The school was amazing. The speeches by the Head of School Peter Crawley and the Junior School Captains were amazing. The singing of the national anthem and the school song was amazing. Premier Anna Bligh's speech was amazing. It was all just amazing! So inspiring. I wish I had copies of the speeches. About excellence. About how everyone's special but some people do just display that extra bit of specialness. About making the most of what you have. Striving to be your best. Having a smile on your face and in your heart. And how fantastic exercise is - makes you look and feel good AND gives you the kind of discipline it takes to become a Premier!

We met with the Premier before and after the presentation. She's truly inspirational - eyes that light up and connect, and so totally in the moment. She had such a hectic schedule for the day, but you would never have known it because while she was with us - she was with us. She shared some personal stories with us of friends who've also had amputations or challenging legs; and presented Cassie and Jade with fantastic framed photos of their Gold Coast Marathon Junior Dash finishes. Isn't that sooooo thoughtful of the organisers? All 3 girls had the best time - posing for pictures with the Premier and with Mr Crawley (they could not stop giggling!).

And aaaaaaah - Tara's speech. Wow! She did us all (well, herself) so proud. I wish each of you could've been there. It was just so beautiful. At first they forgot to call Tara up - and I thought "well, maybe it's for the best. Would be awful if she gave a speech now and got tongue-tied." But I knew it would be a waste for her to miss this opportunity to step up & I knew she'd be sad since she'd rehearsed it. So we quickly alerted Mrs Kirby (who was on great form) - and the Premier called Tara up to the microphone. And instead of listening to me go on about Tara - here's what Mr Crawley said about her speech in the school newsletter:

"She stood before the audience of Premier, staff, officials of the Gold Coast Marathon, parents and fellow students and delivered a word perfect, tone perfect and manner perfect speech. She was already in the role as ambassador for the marathon. Positive, encouraging and not a sign of being self-absorbed by the abundant praise she had just received. If she had not been so impressive we would have shed a tear. I would like to think that the explanation for this extraordinary story is that Year 3 clearly prepares the girls well! I suspect this is really a story of family love and support."

Such lovely words. And to be honest - Mrs Donohue (Tara's fab teacher) was actually instrumental in preparing Tara - last week she cleverly asked Tara to thank a guest speaker for coming to visit their school - so it gave Tara a taste of public speaking!

And Michael Denton from Queensland Events sent us a lovely email afterwards, which included these words: "When we saw Tara run over the finish line we knew she was something special. When we saw her speak yesterday and how she handled the whole day, it left no doubt in our minds that she is destined to achieve great things in her life. What an inspiration to all of us she is and what great and genuine support she has from her family and the school."

We're so, so lucky - to have that support - from all of you and from the incredible St Hilda's. Isn't it amazing how high a human can be lifted...when she (or he) has so many supporting hands holding her up. Thank you!

So now Tara is officially the Junior Ambassador of The Gold Coast Marathon - and her next challenge begins - to encourage and inspire as many people as possible to join her at next year's marathon! (Anyone keen for a visit to the Gold Coast next July?) The Premier also set a challenge to Tony to start training to take part next year...and he's set himself an extra goal - to convince Mr Crawley to join him!

Run, Baby, Run

2008-08-13T22:53:00.009+10:00

Hello!!! Haven't updated for a while coz we lost our camera (which a kind gentleman found and returned a few days later) and have had problems with our internet connection and and and...just been kid/business busy - choir competition, friends, parties, throwing frisbees on the beach, trip to Noosa (for Tone), move to new office blah blah blah.

Anyway - very exciting - tomorrow morning is Anna Bligh Day! As in - she'll be at school to present the honorary ambassadorship for the Gold Coast Marathon to Tara! Aaaaah!!! Tara's been soooo cute practising her little thank you speech all week - sitting in the shower, holding a shampoo bottle like it's a microphone; or delivering it to anyone who wanders in to our living room - like Bill who stayed over last week; Gela, and Linda (beautiful old school friend over from Canada) and her daughter Michelle.

And it's so typical - as the day's drawn near - we've all fallen apart - Tone and Cas woke up with sore throats, I've got a spot on my nose and Tara's licked her lips so much she looks like Homer Simpson. Plus she's developed a sore on Stumpie Star - so today she went to school on crutches without LouLou. Argh! Only Jadie's ok (altho' she's got a sore chest at night). Jadie's actually doing so well in terms of handling all the attention on Tara. We've made a special effort this term - signed her up for tennis on her own and changed our evening prayer from "please heal Tara's leggie for me" to "please help Jadie be more confident" - and the result is amazing - actually visible, and she says she can feel she's got more confidence now.

Coincidentally she won an invitation to a modelling course at one of the birthday parties she went to. She's so not into modelling BUT we saw how incredible the course was for Cas's confidence - so Jadie (who used to FREEZE if anyone looked at her) says she now does wanna do the course.

A huge hello and thank you to Jessica and Lucy - gorgeous twins we shared a garden with in Sydney - who've been SO divine in their support of Tara with cards and letters...and who did the Sydney City2Surf last weekend with their parents, and dedicated it to Tara!

Sian's also been amazing - her mega-support (along with Terry) has enabled us to set up a tax-deductible trust fund for Tara - AND she's gonna be running in the Sunday Mail Suncorp Bridge to Brisbane fun run on 7 Sep. She's raising funds for the hospital that looked after Tara so beautifully - the Royal Brisbane Children's Hospital - click here for more info.

Last night Tara played tennis for the first time since her op - just divine! She didn't wanna get off the court she was loving it so much. The sun was gone, it was dark - and still she insisted on playing, saying "I'm having SO much fun". Sooooooo much more freedom than when she wore her brace. And she was so sweet - when I kept hitting the ball into the net - she said "it's okay Mum, as long as you're doing your best, I'm still proud of you". And she meant it.

Heaps of other news but don't wanna bore you. Very proud of Cas - she's gonna be competing in a French-speaking competition against girls two forms above her this weekend. Go Cas Go! (Allez, Cas, Allez! - oops, don't think that really translates!)

Pics today are from the Gold Coast Arts Centre - they've got this fab outdoor circuit with gym equipment & special places to meditate - so you get to exercise the body and soul.

Tara had a blast - wearing TWO crocs for the first time in her life! Tone tried to teach the girls to skip stones across the water (I thought of you Cam) & Tara ran her heart out - see video below.

Lots of love to everyone! Wish you could all be here tomorrow! And please hold thumbs/cross fingers that Tara remembers to say "Premier Anna Bligh" and not just "Anna Bligh" when she addresses her! (We only found out the protocol today - so we've been bribing Tara with marshmellows to help her to learn it!)

Ice-Cream, Shoes and Prosthetics

2008-08-02T16:34:00.008+10:00

Whew. So it's been pretty full on - mainly with a fab trip to Brisbane to see King K and Gela and an amazing school choir concert at the Gold Coast Arts Centre. Some of the mums were quite tearful (with joy) seeing Tara walking around with long black pants on - she fitted right into the crowd and was walking SO well you'd never have known one of her legs was LouLou in disguise!

In fact - for the first time EVER - we went to Aus Fair the other day and not one person turned to look at Tara - because she blended right in. That's the first time in her LIFE! Altho' it didn't last long - she spotted the escalator and BEGGED us to let her go up and down - so for about 15 minutes straight she walked up and down the escalators having the time of her life (in the beginning holding hands and then finally letting go) - first time ever being able to do that on her own. So that kinda drew a few stares!

Apart from all the usual stuff (tennis, swimming, dinner with friends etc.) - also had a lovely mothers and daughters day at St Hildas, Granny moved into her brand new flat nearby (very exciting!), Jadie and I got colds AND Tone's blood pressure has almost returned to NORMAL!!!! YAY!!!!! Cholesterol still a blah.

Cassie's been very creative - made an ice-cream recipe (heaped with caramel koalas and Dairy Milk) and then cooked it herself from scratch (including making the ice-cream from cream and condensed milk). Very yummy. She also made this small clay Little Miss Sunshine shoe...and the only thing it fits is Tara's stumpy star...so Tara insisted on the photos that are here today. She forced me to photoshop her right leg to also be small - and she just laughs everytime she sees this pic below.

Our visit to the prosthetist yesterday was great (except you know when you're dying for your 8-year-old to be entertaining...and they just suffer total personality-loss instead. Argh!). Anyway - it's amazing how quickly things are changing and improving in the prosthetic world. Altho' Barry (the GC prosthetist) made 2 legs for his other patient (whom we met) just a few months ago - a walking leg and water leg; he now has a far better method. Prosthetics are made up of various components - and he now advocates rather creating ONE component for the main part and then different feet for the various activities Tara wants to do. (So it really is like a Bratz doll where you can put on feet with skates on, barefoot waterproof feet, running feet etc.) So he says he'll specially create Tara's next walking leg to have its main component be all waterproof - this will be the James Bond-like leg - where she puts a gel liner over her knee & thigh with a pin below the knee. Then the leg slots into that pin and you can only release it by pressing on a secret spot on the prosthetic. This means she'll be able to run so much better, trusting the leg that it won't fall off (as velcro-belted LouLou has on occasion!). He'll then create a walking foot and a separate waterproof foot. He says this method is much better because it means the stump only has to get used to one leg; and obviously it's a lot less costly - because the second the stump grows too big - it means only one main leg component needs to be replaced rather than two or more. So it's REALLY exciting and hopefully we can start on that asap - will speak to the hospital on Monday to find out when Tara can stop using this interim leg.

Very sweet. Without us saying anything - Tara's wearing LouLou a LOT more. Like today - Saturday - she hasn't taken LouLou off - and usually when she's at home she does. So she's obviously enjoying the independence and freedom she gets from being able to walk around and carry things at the same time (unlike hopping - very dangerous with a glass of milo or scissors!).

OK - gotta rush. Hairdresser coming in 20 minutes. St Hilda's Dinner Dance tonight at the Sheraton and then 9am start tomorrow - the girls' school chapel, followed by birthday party etc. etc.

Hope you're all having a FAB weekend. Will do emails tomorrow night I promise. Thank you again to EVERYONE for such divine support - wish you could all see Tara in real life (Janet - we'll see you at Xmas!) - just a blossoming bundle of happiness and love.

Busy, Busy, Busy

2008-08-01T16:16:00.003+10:00

Just a quickie to say we've been super-busy - and will update the blog later tonight/tomorrow. (I know you normally check on Friday Zigs - so this message is for you!).

Sea Turtles and Hopping Races

2008-07-22T23:29:00.008+10:00

Just had a divine weekend - such gorgeous huge blue skies...so we've had lots of outdoor activities and Tara's done heaps of walking - including 500 metres each way on the pier out to sea (at the Spit) - pic here taken from the pier. Look how crystal clear the water is - last weekend we saw a sea turtle - sooooo beautiful!

Tara's refusing to use her crutches as much as possible. Keeps leaving them in the car when we drop her off at school. And apparently she never asks for help, even when she's climbing the stairs. And altho' it's not the most sensible thing for her to not be using her crutches, it works so well for her - the determination to go it alone.

But even when she doesn't ask for help - her friends are sooooo intuitive and helpful and just lovely. Like on Saturday - the twins had a friend over and we went to the beach - and Tone and the girls were having races down the dune...but Tara was coming last because she was having to hop without LouLou on. And then their friend said "let's all race on one leg down the dune" - so they did which was just sooooo thoughtful, and she was even sweet enough to try climb back up the dune on one leg...but that's something that only Tara seems to manage at this stage!

It'll definitely be SO exciting once Tara's got the swimming leg from Lizzie Loo and friends - our appointment with the prosthetist is for August 1. Can't wait! We're also gonna discuss getting a leg that'll allow her to wear a rollerblade or iceskating boot - because she's desperate to try those things for the first time ever now that she no longer has a brace...but with LouLou it's kinda impossible because we'd never be able to bend the foot in there. Yikes. Real feet and legs really are miraculous creations! Photo here shows LouLou up close - you can see how it's just a piece of velcro that holds LL up (which is why she sometimes falls off at the most inopportune moments!).

Cassie's learning about the skeleton this term and informed us that girls have 207 bones (I think she said 207) - anyway - Tara was a little upset when we realised that she has 207 minus all the bones in her left foot and ankle since they're no longer there. So we decided she can just say she has 207 bones and not get too technical about it. She's funny tho' - she's realised that for some people her op was a big thing - so there's this toy she really, really wants and she keeps saying to us with a total put-on diva accent "I deserve it, after all the pain I've suffered..." - but she's acting and her eyes are totally laughing as she says it. And when I say to her "what pain?", she can only remember one incident in hospital (when she came off the morphine at the same time she had terrible constipation). So now she's trying to save for the toy instead, one dollar at a time - giving Daddy back massages (she's SO strong with her elbow-massage!).

And to be fair to Tara - she's so not a diva - right now her life is filled with 'firsts' - and each one excites her like she's just walked on the moon. She's so appreciative of each new experience - and calls our attention to it - "look, look - my first time eating an ice-cream while I'm walking" etc.

We let the twins have a first together - walking to the shop around the corner on their own (but I followed behind without them knowing...until I was caught) - and it was so sweet - they were totally holding hands and telling each other how glad they are to be twins. All 3 girls did so FAB at school today - they were awarded a book each for reading & raising funds during the May Readathon. And this evening I've just read the school's weekly newspaper - which has a beautifully written paragraph by the headmaster about Tara including this: "Tara has shown an exemplary mix of courage and a down-to-earth spiritedness since the amputation of one of her legs..." Such wonderful words for a kid to hear her headmaster say. She's a very, very lucky girl to have had such an amazing support system around her - from friends and family to school and hospital staff. And even from people who don't even know her (yet)!

Thanks for the gorgeous birthday wishes! And thanks Alex for the marshmellow cake! Lots of photos today of the birthday weekend - the water was just so stunning, like an aquarium just bursting with fish. (The rocky outcrop in the back is where they're building a ship on the jetty that'll be used in films to appear to be a ship at sea...when meanwhile everyone's safe on the jetty.)

Back to School

2008-07-17T16:16:00.006+10:00

Been a busy week. Cas's show last weekend was fantastic and today was Open Day at school - gorgeous to see the girls in action in their classes. Turned into such a brilliantly hot day it felt like the middle of summer - Tara actually got a bit of a sore on her stump from the heat - argh! The twins' beautiful teacher - Mrs Donahue - says Tara and Jadie have been working hard during this first week back at school - which is fantastic - focus back on school; and I think it helps a little that Tara's stopped taking any medication so she's slightly less fuzzy.

It's very cute in the morning seeing her get ready for school - breakfast, brush teeth, pull on dress, pull on LouLou...like her new leg's just part of her uniform. We struggled to get her school shoe onto LL - so scary - thought we were gonna yank the (very non-flexible) foot off. Tonight we'll have to take the school shoe off so she can wear more casual shoes over the weekend. Wish us luck!

We had a great meeting with Mr Denton and his Queensland Events team on Tuesday to discuss Tara being made an honourary ambassador of The Gold Coast Marathon. There's going to be a formal presentation at the school on 14 August - with Anna Bligh (Premier of Queensland)! Very exciting! They were so gorgeous - they had brought a bag of goodies for Tara, not knowing that Jadie and Cas would be there too...and then two days later we received two express packages for Jade and Cas, with all the goodies and handwritten notes too. They SCREAMED with delight!

Talking handwritten - Anna Bligh herself sent Tara an exquisite congratulatory card, embossed and handwritten just like Princess Diana used to do. She said how sore she had felt after running in the half marathon and was wondering if she'd ever do it again, "and then I saw your photo and felt so inspired". Isn't that just such a lovely, lovely gesture for someone so busy to do? Tara read it out loud and then asked me to put it somewhere 'very special' (top shelf in the TV room so everyone can see it) - so she is aware that this is a great honour.

Happy Weekend Everyone!

Little Miss Ambassador

2008-07-11T00:03:00.008+10:00

The most incredible thing happened today. Phone rings. Cassie answers. Hands it to me. I think "argh, it's another Telstra telesales dude". Then he introduces himself as Michael Denton from Queensland Events...and I think "okay, he's raising money". But NO! He was calling to say that little Tara Maria Panayis so touched everyone on Sunday that they'd like to invite her to be an ambassador for The Gold Coast Marathon! Isn't that amazing!!!?

He said she captured the spirit of the marathon! Apparently there were people in tears when she crossed the finishing line, and those who didn't run looked at Tara and realised they had no excuse not to run next time. (Although, you know, even tho' they may not have run themselves - it was the spectactors' collective spirit that helped carry Tara to the finishing line, willing her on and running from across the streets to cheer her on.)

So apparently the Queensland Premier is going to send Tara a congratulatory card, and there's going to be a formal event for the ambassadorship! We're going to meet with Mr Denton next Tuesday. Will keep you posted!

Other news - great walking lesson at rehab on Tuesday (pictured above), lots of playdates and fab time at Strike bowling alley today with King K and son (and happily for Tone, K noticed his new svelte physique). Jadie came first out of the Panayis's. And Cas has a modelling show tomorrow night. All go!

Stop the Press!

2008-07-08T00:14:00.002+10:00

Wow! Lizzie Loo not only ran 10km under an hour, but with the sponsorship of her amazing friends and family - Tara is now soon going to be the proud owner of a swimming leg! Thank you! She is SO excited - it means so many things - not just to swim, but to be able to walk on the beach and not crawl; and to be able to stand in the shower with her sisters and turn the taps on herself, instead of sitting on the floor!

Tara was so funny this morning - awake VERY early, all dressed and desperate to walk to the shop and get the newspaper...so we did, and sure enough The Gold Coast Bulletin featured a little piece on Tara being a great champion. Whew - she was soooooo happy.

It's Granny's birthday today - Happy Birthday! - just had a fab dinner & the girls spent the day there playing with their cousins (who now each have a copy of Tara's article pinned to their bedroom doors). Sweet man!

And thank you soooooo much George and Cam and Filipa and Lucy and ALL the gorgeous children who walked around Richmond Park in the rain for Tara and Jaspar! It was so exciting coz they phoned us from London in the middle of the walk and sent us this pic via Mands' mobile.

Yesterday Tara made a little video to say thank you to George and Lizzie - see below. And a HUGE thank you to ALL those who were involved yesterday (walking or sponsoring) - it's so hard to say in words what you have just given Tara - it's more than just prosthetic legs (altho' that alone is awesome!) - it's the caring (especially those of you who haven't yet met Tara) that's just the greatest gift she could receive right now...and something that will stay with her for life.

Gold Coast Marathon Junior Dash

2008-07-06T18:34:00.011+10:00

Wow! This morning was such a tear jerker - in a 'happy tears' kinda way.

From the moment Tara took off in the 2.25 km Junior Dash, she was stone last - but with all those people cheering her on from the side, clapping and shouting such inspirationally beautiful things to her - it was so hard to not just stop and sob with pride in her, and gratitude for the kindness of strangers. Instead I had to run/walk alongside Tara saying "come on baby, you can do it" without letting her know how I was breaking inside. I just wanted to pick her up and carry her - but she did it all by herself.

And you know - even tho' she had some pain with her prosthetic and had to readjust it half way thro' - not once did she even think of stopping, giving up or crying. She just kept on going.

At one stage she saw two kids lagging and said "I have to beat them" and she went for it - and did overtake them briefly - but then at the end they raced past her again.

But she didn't mind. She was just soooo excited to get her first medal for running ever! All three girls were.

And it was really sweet because the girls' running numbers were 1, 2 and 3 so their names must've been at the top of the Junior Dash list - and when we arrived, we heard the compere saying over the loudspeaker that "the whole Panayis family is here - Cassie, Jadie and Tara" - so they all got to feel special.

Plus Tara was interviewed by the press afterwards - so that was pretty spectacular for her.

And then we all went for donuts at Aus Fair - with the Paton girls who ran with Tony, Jadie and Tara - and the very nice woman there gave the girls a whole bunch of extra donuts just to be nice! So now they all can't wait for next year's marathon!

See video below for Tara's final 'sprint'...The guy on the loudspeaker is saying "yeah, Gold Coast Bulletin, where are you? Check this out...in the kid's race. You little Champion, you!" Thank you Jean-Luc, George and Lizzie for being such running inspirations in Tara's life!

First Waltz

2008-07-03T22:37:00.008+10:00

Had such a surreal moment last night - Tara was hopping around without her prosthetic on, and came hurtling into my room to get something, and almost knocked me over...but before I could yell at her, she saw my face (annoyed!) and quickly said "fancy a waltz?". So then she grabs my hands and starts confidently waltzing me around the room...and in the middle of all of us laughing at the cheek of it (Cas and Jadie cheering her on from the side) - I suddenly thought "wow, this is sooooooo sweet - my one-legged daughter teaching me so beautifully how to waltz".

Shame man, all she wants - desperately - is a puppy...but we're not allowed pets here. Here's a little pic she did today when the girls (six of them) were playing 'schools' (as you do when you're on holiday!) of her sitting in her dream bedroom with her little dog. Breaks our heart...but Tone and I just aren't in a rush to sell - LOVE our facilities, the beach etc...argh!

Also saw Kung Fu Panda today - love that bit where Dustin's character says "Yesterday is history, tomorrow is a mystery, but today is a gift...that's why they call it 'the present'." The girls spent most of the afternoon swimming and playing 'Kung Fu Shoe' - where you do a power kick and your shoe (waterproof croc) goes flying sky high before descending into the pool/ground/someone's head.

Interesting - saw a movie tonight on Austar ('Music Within') which is all about the true story of the Vietnam Vet in America who brought about the change from 'The Ugly Law' (where disabled people had no rights to be seen in public...and could be removed from public places for being 'offensive' for other people to see). It's incredible to think that the Disabilities Act - which was then followed thro' in about 21 countries - only came about in 1990! Wow - what a relief! We're soooo lucky - that others fought before for us to have ramps and better access AND more acceptance etc.

You know of course tho' that Tara has never heard the word 'disabled' and still has no idea that the 'wheelchair' sticker we've had for years on the car is because of her. It's just been so fab for her to not have to limit herself by labels, especially other people's interpretation of what those labels mean. In fact today it was quite funny because she was walking with Lou Lou and one crutch (which she has to use while she's breaking Lou Lou in) and she caught a glimpse of herself in a shop window and said 'oooh, I look like a Granny with a crutcher' (she means 'crutch') - which is her first observation of how she may look to other people. Her 'one crutch' theory is that young people always have two crutches (coz they've broken legs) and only Grannies have one crutch to help them with walking.

Actually can't wait for the next prosthetic. This one's not that comfortable - it's attached with a velcro band at the top so isn't a snug fit. Will be fab when she gets the leg that hooks into a pin thing...

Happy Weekend everyone! Can't wait for Sunday when we all go running in the UK and here!

Go Godparents, Go Go Go

2008-06-29T17:32:00.019+10:00

Tara was SO excited this morning because it's the first time in 7 months that she's held something while walking! (Kinda tricky to carry stuff when you're on crutches.) We were on our way out to meet the Patons, and she had Lou Lou on, and a packet of sweets in her hand - and she was just going "wow, this is SO nice, this feels so FUN. Don't you just love being able to hold something while you're walking?" Tiny things we take for granted!

Tarakie and Cas have been so interested in anything to do with prosthetics. Tara showed us the biggest prosthetic in the world (on an elephant) in Cassie's Guinness Book of Records; and Cas made me search on the internet for the oldest prosthetic (which it turns out is either a wooden & leather toe on an Egyptian mummy from 1000 BC or a bronze leg on an old Roman 700 years later).

Tara's got this riddle she likes asking at the moment: if you had a choice - to have a lip op like Cassie did, lots of little sores & bruises like Jadie (typical kid) has, or your leg chopped off like Tara - which one would you choose? She reckons she'd choose the leg chop "because the worst thing is the phantom tickles, and at least they're only bad at night". But then her next question is "which would you choose - to have phantom tickles, itchiness or pain?"...and her answer is itchiness, because the tickles are driving her insane - so hard to sleep. (BTW - Jadie's still experiencing similar sensations in her leg - spoke to the doctor about it and he says it should stop when Tara's stop.)

The twins had a FAB day yesterday with three birthday parties - and Tara kept Lou Lou on for most of the time. So it looks like we will be doing the 2,5 km kiddie marathon next Sunday (6th July)...which is really apt when Tara's gorgeous godparents - Lizzie Loo and George - are each doing their own fun run fund raising for Tara in London on the same day! So at least Tara will get to feel a little of what they're going thro'!

George's project 'help a friend' where he's raising awareness and funds for Tara and beautiful Jasper kicks off with a charity walk and picnic in Richmond Park on Sunday; and Lizzie's raising funds by taking on the ASICS London 10km run!!!!! WOW! Thank you Gorgeous Godparents (and Fairy Godparents)!

Those extra funds are gonna help so much for Tara's extra legs. She so needs the running one and the water one - today she had to take off Lou Lou to go on the beach (pic here), but that meant she then had to hop and crawl. So thanks lovely family and friends (and please send us photos Ruby and Lola!) - Tara beamed SO hugely when we told her what you are all doing next weekend.

As Cammie said to some other people, "if I wish anything for your children as they grow (besides health), I wish them the kind of friends and all the love we have!" We are very blessed and very lucky...and quite aptly Tara was reading Dr Seuss' Did I Ever Tell You How Lucky You Are? in bed tonight & we were singing Lucky Lucky Lucky on Singstar today (the girls won).

Belated pics below of Tara having fun with her physio last week, Jadie & Tara with certificates and Cas with her French trophy (and well done Domi in Cyprus!). Plus a video of the girls in the hospital corridors last week - never boring!

Carnivals and a Governess

2008-06-22T10:10:00.006+10:00

Phew. Been a hectic couple of weeks. I think it's like that for everyone - the planets or something. Spent a few days in rehab in Brisbane last week - while Cassie and Jadie were taking part in the school sports carnival. Tara's physio Mandy was just divine - she turned rehab into a mini-carnival for Tara - with high jump, basketball and all kinds of games - so she wouldn't feel like she was missing out. It's really gorgeous how they make the whole learning process be so exciting and filled with all these 'games' for Tara to play. And thank goodness they do - coz the reality is that learning to walk - when you've never actually walked properly in your life - is EXTREMELY difficult. With the brace, Tara never put any weight on her left leg - so she's having to totally learn how to trust that leg and lean on Lou Lou when walking.

This week we're back in rehab in Brisbane for 3 days - doing a couple of walking sessions every day. I'm here with the girls (Tony's coming tonight) - so Tara's had a blast challenging her sisters to basketball and darts matches. Today the other 2 are actually in the hospital school - because the governess of Australia is visiting today so I thought it would be pretty fab and inspiring for them to meet her - the first female governor of Aus. Kind of like our equivalent of the Queen coming to visit. (Actually I've just seen the girls - and apparently the governess put Jadie on her lap and had a long chat, & told Cassie that her and the Queen talk about the same thing that all Grannies talk about - their grandchildren.)

Was a little heartbreaking last night - Tara's phantom tickles were so strong she couldn't sleep - started sobbing and saying she wishes she'd never had an amputation. But today she's all smiles and happy again. Actually her smile today is totally lighting up every room she's in - this morning we met with her surgeon and she surprised him by walking in, as promised...and she deliberately wore leggings so he wouldn't know which was her fake leg! And then she laughed and laughed coz he (so sweetly) guessed the wrong leg.

Granny's back from her travels & Tara celebrated over the weekend by embarking on her first outdoors stroll ever - to our favourite Thai restaurant around the corner (Lemongrass, Lizzie Loo!). Talking restaurants - last week, by mistake, we landed up in a Brissie restaurant that was having a trivia night - and Tone shone! Very smart on the trivia! He's doing fab - doctor's really impressed by how much he's reduced his cholesterol on his own with diet and exercise (including lots of surfing). Now he just needs to focus a little on meditating and getting enough sleep! I've been freaking out a little coz it's already the 24th of June - and I haven't yet had 2 consecutive hours totally on my own. Just need to rejuvenate every now and then!!!

Cas did FANTASTICALLY in the French speaking finals - she came tie first; and we discovered that the extra long speech she was invited to present is usually in a section reserved for children of French parents only - so that was quite an honour (and makes all those trips to France worth it!). The head of junior school said they've decided to make Cassie a 'native French speaker'. THANKS CHRISTINE!!!

Quite sweet actually - coz Jadie and Cassie won quite a few certificates at final assembly on Friday for being great 'citizens' and for all the effort 1's they've achieved in class...which was just divine, especially for Jadie Marmaladie - to be recognised for how fabalicious she is! Tara didn't get a great 'citizen' award - but then she's provided the opportunity for so many other girls in her class to shine and help her. Now we have a 3-week holiday, packed with many Baxter birthdays and a disco party that Tara's looking forward to dancing at this weekend...on two legs! If she can handle that - then we may just attempt a mini-marathon in 2 weeks' time!

A little pressie

2008-06-16T23:29:00.004+10:00

Tara was so cute tonight - she came thro' and told me she had a pressie for me - she lifted her pyjamas up and there she had tied a little ribbon around Leggie Loo. So beautiful. I covered her little stump in a thousand kisses.

Tara and I are off to Brisbane tomorrow morning for a couple of days for her intensive walking lessons. Jadie and Cas are gonna stay behind for the day - to compete for their house in the school athletics carnival - and then they'll come up with Tone later in the day - and we'll all go to learn-to-walk lessons on Wednesday. It's been a quirky few days - Tara walking up on us occasionally without us realising she's got her leg on...or friends laughing because we're all shouting "did someone remember to bring Tara's leg" which I suppose isn't a question most people normally get to ask!

Our thoughts are with Thea Jenny and her family tonight. If there's one thing this blog has taught Tone and I - it's how much is going on in so many other people's lives. We've been so humbled and felt so bad at times writing our posts when so many of you have had far bigger things going on in your lives.

Barbie socks & happy hands

2008-06-12T22:40:00.006+10:00

Tara's been SO gorgeous with Lou-Lou. She took her in yesterday and put her on for the class to see - even did a few poses that she's never been able to do before, leaning on her left leg - and the teacher took lovely photos, blew them up and put them on the noticeboard for everyone to see. The only not-so-fab thing was that one of Tara's close friends did a little bit of the 'ugh' - which was natural - it's not something she's used to seeing - and Tara says she totally understood (plus her friend said she was so sorry afterwards). Her other classmates all said 'how cool' she looked and wanted photos of her posing, and only teased her because LL has a Barbie sock on...which apparently is so not cool for an 8-year-old (oops - my fault).

Kinda cool - just noticed LL also stands for Left Leg. (And of course Lizzie Loo!)

It's very sweet watching Tara sometimes - she's so mature and insightful (and old soul like Jason says); and she's using these words like prosthetic and gabapentin as if she's talking about a bucket and a spade. And then you see her being so little girl, just wanting to cuddle with her teddies & dance in front of the mirror...and it reminds you, she's just a kid.

She saw a link that Anita sent me - of a horse in New Orleans who has a prosthetic (see Related Sites on the right) - and now she'd LOVE to go meet Molly. So maybe that's where we'll stop off on our next trip to Europe...

Cassie also borrowed Lou-Lou yesterday to proudly do a show-and-tell with her class. She's so the best big sister a Tarakie could wish for. And we're SO proud of her - this morning she had a French speaking comp. and she parlez-vous'd her way thro' to the finals next week. (Thanks Christine for last-minute aid!) And Jadie is divine - we've been playing lots of tennis.

Thanks to Jen for 'sound of glad hands clapping' pic today (clapping for Tara's first few steps!) & thanks Kim for the call - that was SO special! Tara had the best time this afternoon reading aloud (VERY aloud) all the comments on the blog - she just loves them! Thank you, thank you beautiful fairy godmother Filipa for always being there! And King K - Tone's seriously a lean, mean fighting machine right now!

Lou Lou has Landed!

2008-06-10T17:30:00.009+10:00

Tara went for her first leg fitting today - and within minutes (and after a couple of minor adjustments) - it fitted her perfectly! Like Cinderella. AND she walked!!!!! Just a few steps - but one small step for you and me is a giant leap for Tara! She's even grown taller - just by having the prosthetic on...because now she's better balanced.

So sad we didn't realise how fab today would be - we thought it would just be a fitting - nobody (including rehab) knew she'd take to it so quickly. So Tone and Jadie actually weren't with us. But we did the video thing (small bit below when she was walking to Cassie - who had come along for support). Cas kept telling Tara how much she loves her family and her life. And Tara agreed and said again how God really wanted her to be like this, and she's so happy.

Theme tune for today: Hey, hey, hey, what a beautiful day.

It was a day full of such lovely moments - sooooooo cute to see Tara stand for the very first time in her life, with two socks and shoes on!!!! She just stood there, frozen, getting used to it when the prosthetic was first put on. And then she made some small baby steps to the mirror, holding on to Mandy the physio, so she could see what she looked like. Grinned like a cheshire cat. Then we did the whole walking with the bars thing. She didn't wanna stop & kept taking her hands off the bars so she could walk free. Rob, the prosthetist, and Mandy were SO happy with her and let her bring Lou-Lou home! She needs to practice walking a few minutes in the morning and a few more in the evening. Has to take it real slow - coz any little blister can mean having to wait weeks for it to totally heal, and then start the whole process all over again.

We'll be staying in Brisbane next week for a few days for Tara to have intensive walking lessons in rehab. And Tara's back on one tablet a day - the phantom tickles were just too much and she said she'd rather have the tablet while it's doing a good thing. The docs today agreed that it's better to keep her on it for at least another month - coz it's important to be on painkillers while she's learning to walk.

On the way out of the hospital we bumped into Tara's gorgeous surgeon - Dr Paul Pincus. Pic here. As you can see - he was just over the moon for her - and says he can't wait to see her walk into his office unaided in 2 weeks' time, when we have our next appointment with him.

It's funny how just a taste of walking on two legs for a few minutes has now spurred Tara on to want more and more. She's now fully into the idea of getting an athletics-type prosthetic (like the Olympians have). Before she used to say they were too ugly - but now that she's felt what it's like to walk on 2 legs; she just can't wait to run. She wants to run faster than the other girls. So I said we can look into it - maybe use some of the funds Jean-Luc has raised - which would be really fitting seeing as he's a top athlete.

Had another magic moment when we got to the train station and the girl at the coffee bar offered the girls an extra free marshmellow muffin with the one they'd already bought...and altho' they SQUEALED in delight - instead of guzzling it down, they kept it for Jadie & shared the one they had.

The three of us were just SO excited about getting back and showing Tone and Jadie that we forgot to phone before leaving Brisbane, to let Tone know what time to pick us up. Such dorks. But we had a fab time waiting - and Tara quickly whipped on Lou Lou again to surprise Tone...altho' he was so busy talking he didn't even notice straight away.

But Jadie did. She was really excited and also found it a little weird. She's never seen her sister walk towards her with two shoes on. She played with Lou Lou afterwards - couldn't believe how heavy 'she' is. The girls have so given Lou Lou a personality - they're LOVING her - she 'slept' on the train so we all had to whisper...and tomorrow Tara's taking her to school for show and tell. She did say this evening that now she really wonders what it's like to walk on two real feet.

Our long weekend was great. (Funny that we have a public holiday for the Queen's Birthday but England doesn't.) Tone, Gav and some mates went on a surf trip to NSW (altho' Sian - he's still not totally laid back!). The girls and I did an amazing birthday party, swimming, play date, ice-creams and lovely coffees and conversation with Gela (so divine that she was with us just before Tara walked for the first time, just like she was with us the night before Tara's op). And thanks to the Paton girls - our girls are now playing imaginary DS with beautiful drawings they do on tissue paper...so their real DS stays unplugged. Time is still our biggest enemy - like with everyone - just not enough time to get all our work done, do Tara's appointments & everything else that crops up from homework to Cas suddenly needing a minor op on her lip last Friday.

So life is so totally not dull - and if we don't reply to emails or calls - pls know that we LOVE getting your news (it feeds us!), but we're just swamped in too much work (not complaining!) right now to answer properly sometimes. Sorry!!!! I think the biggest misconception about our whole Tara experience has been how hard everyone thinks it has been for us emotionally - but it's seriously been a very happy, light and joyful time - the hardest thing has been the disruption to our working hours. That's what's been stressful beyond words - tryna stay on top of things. And being DESPERATE for just 30 minutes of having nothing to do. (Pic here of Rob the prosthetist.)

CONGRATULATIONS to Zigs and Christian!!! And a HUGE hello and hope you get better soon soon soon to (Jimmy's) Zack. Video below of Tara walking to Cas for the first time in her life.

New leg soon!

2008-06-05T10:13:00.001+10:00

Rehab phoned and they've got Tara's leg ready for her first fitting on Tuesday!!!! Yay!

Movie Stars & Rebel Yells

2008-06-03T11:46:00.015+10:00

It's been a busy couple of weeks. Beach, parties (including a Boeremusiek one!), projects and the girls have had turns being ill. Tara's home at the moment. Rogue Traders (Aussie rock band) concert was fab. (Pic here with Brookie.) Jadie's mastered the art of applying Tara's bandage - very proud of her! - AND Tara's now medication free! YAY! We may get her memory back! Phantom tickles persist. Tara said the other night that she so hopes it's not gonna be like this forever - but the reality is that it could be (tho' not necessarily) - and for the freedom she's gained, it's worth it...plus she's soooo lucky to not be like so many other people with amputated limbs who suffer excrutiating phantom pain for the rest of their lives.

Tone's looking good - this BP and cholesterol problem's been great for him. Watch out Max. He's the new Skinny! He's running in the evenings with Cas who volunteered to run in her school 800 m race next week, to earn her House a point, even tho' she comes so stone last she can barely see the girl in front of her. You go Cas!!!!

Apparently Tara's being treated like a bit of a movie star at school - which is fun but does mean a huge shadow falls over her twin. We were in the shops last weekend when a little girl walked in and said 'hello Tara'. Tara mumbled hello and carried on looking at the Diddlina's...while Jadie said hello to the little girl by name, with a smile - and the girl just blanked her. Jadie said to me afterwards that the girl hates her. But it's not that. She just didn't even notice anyone else - she was so excited that she'd spotted Tara outside of the school grounds - she was consumed.

There was another incident at school when someone tried to touch Jadie just because "she's famous because she's Tara's sister". So Jadie went into rebel-overdrive and was offish to two of the sweetest girls at school and refused to push Tara's wheelchair when it was her turn - but after a heart-to-heart she went to school yesterday and apologised to those girls; and on Friday she pushed Tara's wheelchair - and they both LOVED it - Tara said it felt like Jadie was her best friend.

I asked Tara if she wanted to write a little book from an 8-year-old's perspective of what it's like having an amputation - but she said it would be too boring. I said I thought other kids may be interested. But she said "maybe they would, but it would be SO boring for me". She really is so not phased by it all. In fact when Tone and Cassie went for a run the other night, Tara went and told Tone in all seriousness that she wouldn't be joining them for the run because she was busy doing something else. She never thought that maybe hopping on one foot could hold her back! (And yes, that's a leg warmer on her arm...)

She was quite interested last week tho' when a little girl was featured in the British Daily Mail - all 4 of her limbs had been amputated because of meningitis. Tara stared at her for the longest time - and kept scrolling down to look at her pictures again and again. But the thing that fascinated her the most was that upside down (doing a handstand) this little girl's face resembled hers. So she really connected with her.

In the last week we've had quite a few parents come up and tell us how great it's been for the children in Tara's class to take turns pushing her and learning 'responsibility' - actually, so many people said it I started wondering if there'd been a secret conference about it! But it just seems the girls get really excited about their turns and take it really seriously - one girl even dreamt she lost Tara, which apparently reveals the great sense of responsibility. In real life, so far, only one girl has tipped Tara out of the wheelchair by mistake! And there were no injuries. By far the most dangerous thing has been slippery floors when she's on crutches - she fell on her face in the supermarket the other day. Bit scary.

We're SO excited for Ziggi's wedding this weekend - and SO sad that we won't be there. I was almost, almost gonna fly out tomorrow for the weekend in France (thanks Cam Cam!) - but at the last moment the Panayis family decided they weren't quite ready for mum to be on the other side of the world without them. Tara actually became very tearful and said 'thank you mama' when I said I wasn't going to go. But Zigs & Christian - the WHOLE family wishes we were there with you - and we so definitely will be in spirit! (Chamonix pic here to remind you of us.)

And a HUGE HAPPY WEDDING ANNIVERSARY to Kim & PJ, Jonathan & Anne and Lisa & Christophe!!!

Thanks guys SO much for all the messages and for making each of the girls feel so special. And thank you also for all the gifts. If you haven't yet received a thank you card, it's totally Tone's and my fault. The girls lovingly make them...and then we forget to post them. Argh! Sorry!

Here's vid of Jadie sand surfing like a pro...like father, like daughter...

Hey, hey it's Friday

2008-05-23T23:27:00.000+10:00

Tone and I went to a fantastic surprise 40th on Saturday night (except I spoilt the surprise by arriving and asking Shane when he'd found out about it...and he hadn't! ARGH). Anyway - heaps of the St Hildas parents were there - and it was just so divine hearing their responses when they found out we were Tara's parents. They were like 'WOW! Isn't she amazing?!' Not one person said 'how are you coping?' or anything 'commiseratory' - coz they've seen Tara firsthand so they know what an amazingly positive experience this has been.

Her measurements went well. Rob, the Royal Brisbane prosthetist, is really happy with her bandaging; made her a cast (pic above); and he should have the interim leg ready for her within 3 weeks. Occasionally Tara's bandaging comes off at school & so one by one she's been able to proudly show her stump to her friends. You can tell she can't wait to let EVERYONE see.

It's our wedding anniversary this weekend - 11 years!!!! Thanks Ashley for reminding us! Very sad to not be at Hotel du Cap - but at least we were there for last year's 10th. This year we'll be taking the girls to a special rock concert for under 18's. Great thing is we get wheelchair parking so we can park right up front & avoid the crowds! (Gotta have some advantages!) Altho' not sure if we'll take Tara in wheelchair or crutches. Hmmm. Positives & negatives. Blah.

Hope you all have a fab weekend - especially Mum, Verena and Janet who are in Antibes! (Pic here of the family in Antibes last year - thanks Donna Madonna.) The girls have obeyed Cam Cam and all written their own messages below - please post a comment if you can - will make them feel so good.

And lastly - a special prayer for all those little school children in China who have suddenly and shockingly become amputees - with no preparation, no neat medical operation and nowhere near the amount of support and love Tara's had. Can you imagine?

Cassie's Update

2008-05-23T15:29:00.004+10:00

Hi its Cassie

Tara is a very brave girl! Last night Tara got a very ticklish stump. Mum told Jade to give it a rub but Tara did not let her. I asked her if I could do it and she said no. Tara made Mum do it. I keep reading these polar bear books. It has all these ways to save the polar bears. One way is to put the lights off when you are not in the room. I always do that and some times Mum, Dad, Tara and Jade get angry because they are some times in the room. You can also plant a tree that will help get rid of harmful gases.

I am really excited about Tara getting her new leg. Above the knee it is Leggie Loo and below it is Stumpy Star. The leg that Tara puts on Stumpy Star will be Loo Loo. Stumpy Star looks good but there is a really red line on Stumpy Star that does not look that good. At school Tara has to come past my eating place to get to hers and I always run up to her and say Hello. I always say hello to her when ever I see her.

My friends some times don't like it because we're in the middle of playing and I run off. Stumpy Star is some times a bit rude and does not say good morning to me. Jade and I have been sick so Tara has been going to school by herself. On Thursday it was one of the first times Tara ever went to school by herself.

Tara keeps putting the green bandage on. I like the pink and blue ones. I have been going to the coffee shops with Mum, Dad and my auntie Vets. Vets comes to work at our house all most every day. They go for work meetings and I get to have a baby chino. I have not gone to school the whole week. I miss school. I was going to go to school but Dad said I was to sick and Mum said I was going to disturb my class because I keep on coughing. At school we are doing this thing called readathon. We have to read 100 books in each class and today my class has read 100 books. We also have houses. There are three houses and you have to read 15 books for your house. I have read 14 books for my house. My ear is really sore.

Love from Cassie Jo Panayis

Update from Jadie

2008-05-23T14:55:00.005+10:00

Hello it's Jade here.

Tara is not sick like me. I am very, very sick - like Cassie. We both stay at home watching movies. When I was at school last week, Tara did high jumps and lots of them. Everyone clapped for her. They couldn't believe she landed on one foot. I knew she could do it.

We saw Mana and he was sooooooooooo amazing. He sings, dances making butterflies and birds and eagles with hula hoops. One night I had to go to mum's bed because Tara was snoring so loudly. And another night she kept me awake with her ticklish stump. My tooth came out!!!!! I did a project on recycling paper.

Bye Tara and everyone else.

love

Jadie

From Tara...

2008-05-22T00:37:00.001+10:00

Hello everybody

I would like to tell you some things.

Last week it was book fair and on Friday a man called Mana from Polynesia came to do a show. IT WAS AMAZING!

This week I went to get my leg measured. Every week a girl in my class gets to push me. Next Monday it is my day and I am so EXCITED!

Thanks bye.

Heaps of progress

2008-05-16T10:08:00.015+10:00

Oops, haven't updated for a while. Been pretty hectic tryna catch up on work. This was the first week we didn't have to go to Brisbane. Whew. Tone's blood pressure still not great - so he's exercising flat out, eating right, breathing, and tryna laugh instead of going straight to the grumpy place.

Tara's doing FAB. Her 2nd scar (one that formed after the other one finally fell off) has also fallen off. Major YAY! She's bandaging her leg like a pro...altho' we're still annoyed that the hospital insisted on us doing our own bandaging in the first place when most western countries use stretcher socks which are far more efficient (just pull on!). The physio in rehab tried to show us last week just how a 'professional' does it - but her bandage unravelled before we'd even got downstairs! So we'll definitely tell her that next time we see her - especially since it turns out that they could've given us customised stretcher socks by using the ones they have for adult arm amputations.

There were a couple of not-so-divine incidents in the last week - Tara was getting changed for gardening class one day, and some little kids stood on the other side of the glass door and watched her closely - and then said 'eeeugh'. These kids were younger than those that were told all about Tara in assembly - and we thought about saying something to the school - like maybe suggesting that the younger classes get told about Tara's leg too coz they would be noticing her in the playground etc. And most negative reactions come from ignorance. But then we thought, you know, you can't dictate to everyone how they should react & you can't wrap Tara in cottonwool - so a little bit of exposure to what's really just a natural response - could actually be useful. As for Tara herself - she wasn't upset at all; she understands & said "oh I don't let it get to me" & you can see she doesn't. One of the older kids did say that she should try not change right in front of the door next time!

It did make us aware tho' of how totally thankful we are for all the positive love and response that Tara's been getting - every little message, comment, pressie, card, prayer & hug is filling her up with so much positivity - laying such a vital foundation for her self-esteem & strength - and providing an amazing reservoir of love that she can draw on for the rest of her life to handle those knocks she will inevitably get.

The other incident was when we were walking thro' a park near the beach. Tara was racing ahead of me on the wheelchair & I was running to keep up, and I heard this little girl, maybe 5ish, say to her mum "wow, did you see that girl? Her leg's chopped off." And instead of her mum saying "yes, that's called an amputation" or "yes, and did you see what a pretty shirt she had on" or something that would acknowledge Tara's leggie loo & that her kid was correct, she instead went 'SHHHHHH SHHHHH' in the ugliest, loudest, most horrified way - like she wanted to throttle her child. And I totally understand. She meant well. The poor mum was mortified - thinking her kid may upset Tara or I. And I may have reacted the same way before having had Tara. But yikes. Now that I have had Tara - I just think those kind of reactions are what keep the social stigma going: "don't talk about it", "pretend you haven't noticed", "don't look - or at least don't get caught looking"! Blah, blah - it's just kinda crazy - meant well but just projects a shameful, too-awful-to-acknowledge kinda message.

Anyway - Tara didn't hear it - she was going far too fast; and sadly I didn't use the opportunity to change just one person's perception coz I was sprinting after Tara. Next time!

So - back to that reservoir of love. People keep asking how we're "really" feeling - but it's all here on the blog. There's nothing we're hiding or tryna put on a 'brave face' for. And that's probably thanks to all of you - for all the love and support - this blog has really helped us feel like we're all in this together. So the blog and your participation has made us much stronger than we ever would've been otherwise. THANK YOU!

The only tears we get for Tara are when she makes us so proud - there's no sadness about her amputation per se. In fact - it's been amazingly liberating. Even now - before the prosthetic - she is SO much free-er than she ever was with the brace.

And our other tears come from you guys. The messages that touch our hearts & feed our souls; and the inspiring things so many of you are doing - Jean-Luc started an amazing thing with his fund for Tara. It still blows us away that JL stepped in like he did. As if an angel guided him. And he's inspired so many others like Lizzie and George and kids at Tara's school. There's been a heap of red tape - but finally it looks like Tone may have been able to set up a Trust Fund for Tara which'll allow for tax-deductible donations that she'll be able to draw on for the rest of her life for prosthetics. We'll have more info next week - but thank you for now to Terry and to Sian for agreeing to be on the committee. Terry took out so much time to research and advise us. And Sian's been a saint - simply saying "I am happy to help in anyway I can" when Tone asked her.

Most exciting news? Tara will get her measurements done on MONDAY for her first prosthetic!!!!!!!! Also we're weaning her off the phantom pain tablets. Not sure whether they've worked or not. She still gets phantom tickles, but would they be worse if she hadn't take the tabs? Don't know. We do know tho' that it's definitely had an effect on her memory - normally she's like an elephant but she's been quite hazy - so it'll be great to get 100% Tara back!

Photos and videos today of last weekend (Mother's Day) including the girls racing each other on bike, wheelchair and rollerblades; brekkies with the cousins & the girls playing Singstar (not great quality - but shows how Tara's leg is so not stopping her grooving!) - HAPPY (belated) MOTHER'S DAY to all the fab mums out there!

Slip, sliding...

2008-05-07T18:54:00.009+10:00

The girls partied up a STORM for their birthday - and they did both wear their wigs (blue and pink) for the disco - looked SO fab - but sob, the photographer didn't get any pics of them before they'd sweated too much and taken them off. (He also managed to not get any pics in focus. Blah!) Tara was such a star - actually it was so cute coz one of her pressies, coincidentally, was a chain that says 'Superstar' (and we've been calling her leg Stumpie Star or Stumpie Superstar) so it seemed fitting - and she wore that all weekend.

Anyway - her and Jadie had the best fun. It was so divine to see Jadie being celebrated too! Saturday they were spoilt rotten by their cousins and the Patons...and then we went to the disco where they received over 50 pressies! Yikes! Thank goodness one of their friends stayed over to help them open the gifts! Tara raced around all night - you couldn't keep up with her - no wheelchair - just on one leg, and occasionally on her crutches. (Thank you sooooo much to all her gorgeous school friends who carried those crutches around!) She did everything the other kids did - including jumping wildly on a Jumping Jack Castle and dancing on stage (see photographer's blurred pic above). When I was telling one of the nurses about it today, I got such a lump in my throat with pride at how she just went for it - 100% enjoyment, totally energised and SO happy. Not one whinge about anything being too difficult.

And the next day was more of the same - the girls and their friends were climbing up this steep sand dune and then sliding down on the body board. We made Tara go head first so she wouldn't damage her stump...but later that afternoon, at a friend's birthday party, she slid down this mega super-sized slide about 100 times - FLYING down it, feet first, with her stump in the air, laughing out loud. SO scary to watch...like with the dancing and jumping, it's easier to just not look! Otherwise you panic too much - and we'd hate for Tara to be limited by our fears! And we realised that sliding so fast is probably even more fun for Tara than other kids coz she's been confined to the wheelchair for over a month - so it's just so liberating and exhilirating to just let go and move!

Great news is her scab has finally fallen off! Yay!!! So there's a bit of a donga there now. Will have to wait for that to heal. And we'll be doing the special shaping bandaging in the meantime. Cousin Phil has successfully tracked down stretcher socks for kids in Aus...but now we've been told she's been doing the bandaging so well that her leg's almost perfectly shaped. And if everything continues as well as it now is, she could be fitted for her interim leg ("the ugly one", they warned us again today) in 2 weeks' time! It would only be ready 2 weeks after that - and then the learning to walk starts...so maybe, hopefully, we could be seeing Tara walking in 6 weeks' time. She says she feels like she's starting her life all over again...in a good way (coz she loved her old life too!).

Swinging free

2008-05-02T23:55:00.006+10:00

It's the eve of the twins' birthday and they're SO excited...but also soooo sad to be leaving 7. They've loved it. Anitakins once gave me a book about a little child who hid away because they didn't wanna turn 7, and I thought surely no kid felt like that - but turns out some do! After lights out tonight, we found both of them tucked up in bed with Cas "coz it's our last chance to cuddle with Cas when we're 7". Tara was also so excited at the realisation that at midnight she'd be older than Jadie for a whole 10 minutes! And they were both SO chuffed to get a happy birthday message from 2 other twins - Skye and Shannon in Jo'burg - THANK YOU!!!

Tone and I have been up till midnight drawing them cards. We decided that since we're always hassling them to do the 'meaningful' (ie. cheap) thing and make their friends cards - we'd better do it too!

And Tara's been bonding beautifully with Stumpie Star. She holds her in her arms, against her cheek and says "I love her. She's like my best friend." Kisses her all over. The skin is still incredibly sensitive and so usually she won't let us touch her stump - but we mentioned tonight that she'll only be able to get a prosthetic fitted once her skin has toughened up - otherwise it'll hurt too much. So she took it on board and raced around our room, on her bottom, touching everything with her stump - from magazines to clothes to wooden furniture etc. - and then she made each of us introduce ourselves to Stumpie Star - kinda like a ceremony - so that Stumpie could 'get to know us' she said. We had to each say "hello Stumpie Star, I'm ..." and then stroke & massage her and kiss her. Apparently now that Stumpie knows us - we'll be able to touch her and massage her more in the future. Tara says she feels like she's beginning a whole new life.

Pic today is from Monica - it was such a special moment for us -just a couple of weeks after Tara's op and she hadn't yet been out of her wheelchair - until this moment when, without us realising, she had hoisted herself out of her wheelchair (coz she couldn't yet hop) and onto the swing - and she was just SO happy, so free, and soooo proud of herself...

They wanted us to go to rehab...

2008-04-30T16:11:00.008+10:00

Amy Winehouse soundtrack today...altho' it wasn't us who said 'no, no, no'. It was rehab. We saw the specialist on Tuesday - he's happy with Tara's progress...altho' we're still delayed by the scab (argh!). So he wanted us to go to rehab to learn how to do the shaping bandages to prepare her leg for the prosthetic...but they sent us packing back to Physio to do it (internal red tape, blah). The taping itself is extremely blah - altho' luckily Tara LOVES it. Whew. (And she doesn't want Tone to learn coz she knows the wannabe-doctor in him will take over & she wants to do it on her own.) But it is a schlep - has to be done a few times a day, not really efficient - so we've sent an SOS to cousin Phil to try source some shrinker socks for children in the UK.

Tara's amputation continues to bring out the best in so many people. A bus driver yesterday insisted on us riding free - and it's not like he was even a nice guy. He YELLED at some other people. And a teenager jumped up with a huge smile to give Tara a seat on the train yesterday. It's never happened before! (Shame, a very large blind guy tried to sit in Tara's empty wheelchair - managed to get him out before he and the chair fell over...)

Best news yesterday was that Tara can now swim...and occasionally use crutches - altho' we're gonna hold off on that one coz if she falls the delay will be mega-months. So she insisted on her first swim last night. And it was just beautiful. Jadie turned into the twin you wish you had - swimming with Tara, doing handstands, pogo-ing thro' the water - and then the two had their first bath together in months. (The last few weeks, Tara's baths have been very non-glam - all alone to prevent infection, with her leg hoisted onto a roof-like lid of a rubbish bin which was the only waterproof item we could find to keep her leg out of the water!).

She continues to have a fantastically healthy outlook. Like I happened to mention how gorgeous the modelling teacher's legs were and Tara (sitting in the back of the car with her sisters) said "what about ours?" (so I told her their's are all fab too). But she's aware in a good way that she has something a little different - yesterday, between Rehab and the Physio I had to push her past the very crowded cafe - and she didn't have her bandage on. So she goes "oooh, people will see my leg". So I said "is that a problem?". "Oh no!" she answered. "I want people to be able to see my stump." And just outside the cafe we saw a man with a really mangled and shrivelled body, curled up weirdly in a wheelchair, and Tara said "you know, that man probably thinks he's normal, because for him, he is normal".

So - in the spirit of Tara's "let them see me as I am" attitude - today's pic at the top is the first public photo of her unbandaged, bare, naked stump (currently called Stumpie Star by the girls)...and two very squishy faces with tight swimming caps on!

Below is Tara's first swim in the indoor pool - it was late at night so a bit dark - Tara on the left, Jadie on the right. BTW - new blog post below as well (I've published 2 at once here).

Seagulls and Surfers

2008-04-30T09:58:00.005+10:00

We had an amazing day with the girls' cousins and some friends down at Broken Head. So gorgeous. Sun, rain, bbq and a lot of incredible surf (go, Tone, go!). We taped a plastic bag around Tara's leg and she played on the beach (and in a clay cave - VERY messy!) with the other kids like there was no tomorrow. The day ended with this beautiful one-legged seagull tottering around in front of us - and the sun setting behind us. Just lovely and kinda poignant.

The drive home was really funny coz Jadie's developed a similar ticklish toe syndrome to Tara - and just like Tara, she can't satisfy the itch - so it drives her insane (the tickle is somewhere IN her foot where she can't reach). Quite interesting. They're not identical twins (at all!) - but there've been quite a few similar incidents...really sweet.

The twins had a friend's birthday party on Saturday - and the lovely mum told us that she's gonna raise money for the Royal Brisbane Children's Hospital in her next marathon (because Alex had told her about Tara's experience - where there were days when no food arrived, machines didn't work, wards were full etc.). So that's fantastic! It's kinda like the NHS here - a service that's soooo needed and yet not well supported. And yikes - would be awful to turn into America's health system!

Another kind mum approached us and offered up her husband if ever we needed his services (I don't know if she's told him!). And a very brave mother invited all 3 girls for a sleepover on Saturday night! They LOVED it - were totally spoilt (altho' Jadie did predictably cry a little at night coz she missed us - but Tara comforted her).

Tone and I had a fab stroll to Surfer's - fastest one we've done forever (sans kids makes a difference!). Had Nando's for old time's sake and then watched Sean Penn's Into the Wild - which happened to be the book Paul was reading when he died. So it was interesting. Heartbreaking.

Not sure if it's Tara's op, pressure of tryna work when there's so much other stuff to do, or just genes - but Tone's blood pressure's a little on the high side...so we're tryna get him to chill, chill, chill! Thanks to everyone for their support - especially YiaYia and Bapou! Thank you.

Goodbye Lizzie Loo

2008-04-24T22:41:00.023+10:00

Oh sob. Lizzie Loo's gone. But wow - it was amazing to have her. Such brilliant timing. Just when Tone and I were running out of energy - she swooped in like Mary Poppins and lifted us all up again. And she spent soooo much time with the kids so Tone and I could catch up on work. The girls really needed that attention - and Lizzie Loo was incredible - face painting and teaching Tara to swallow capsules, baby chinos and um...pink champagne (with LOTS of orange juice)! When she left yesterday, Tara packed her new pink billabong bag (from the Coopers, thank you!) full with clothes and medicine so she could go with Lizzie back to London. We told her she had to stay to get her pretend leg, but she wasn't worried. "Just post it to me," she said. Luckily when they got to the airport, Tone realised Tara didn't have her passport so she couldn't leave! Whew!

Tara's developed some party tricks - like asking Lizzie Loo to say hello to Leggie Loo - and then flapping her stump up and down to say hello. When she's really excited - which is a LOT lately - she flaps her stump so fast, she's like a dog wagging its tail. The scab on her scar is unfortunately still there, so we still can't start the process of shaping her stump for the prosthetic. But we're having a good time in between. It's amazing how good these set backs have been. I don't think we would've coped nearly as well with Tara's op if it had been when we first thought it would be back in January. We were so not ready for it then, in retrospect. So now we've been directed to soak Tara's stump in the bath as much as possible to help soften the scab. It's a very strong sensation for Tara - that feeling of the water on her skin. And she can't understand why her stump feels so heavy in the bath, compared to her other leg which is longer...and unfortunately nor can we (so if anybody knows the scientific answer - please yell).

Tomorrow it'll be a month since Tara's op - I had this vision that she'd be like JFK when he was a kid - bedridden and immersed in books - with so many successful people (even Carly Simon) you discover that they were stuck in bed for ages as children. But thanks to DSs, DVDs, laptops and a kid who REFUSES to be bedridden - Tara hasn't quite read as much as JFK...and in fact has probably been the most active of all of us - rushing around like a cheetah on 3 limbs, or hopping on one leg...even jumping on the trampoline...

She's been a little angel - lots of loving (helped by having her Lizzie Loo here). Actually - one of the moms at school told me how her daughter was so happy because Tara had told her that everyone has guardian angels looking out for them. And it was so poignant the other day - we met up for coffee with a friend who recently lost his brother, and Tara curled up snugly in his lap the entire time we were together, occasionally stroking his shirt. We all thought maybe she was cold and just loving the comfort of C hugging her. But afterwards she told me she was trying to pour all her love into him to help him feel better.

The rest of the holidays were fab - lots of social visits and play dates - and first day back at school was so good that the teacher had to have a word with the class to stop giving Tara so much attention! Cassie was voted Form Captain of her class (wow! well done!) and gorgeous little Jadie made it into the coveted Top 20 in the cross country race (amazing!)! It's so funny though. You do what you can to try and give everyone attention...but still it's never enough. Cas wrote Tone and I each a note on the paper tablecloth at Lemongrass (the local Thai restaurant), begging for a day alone with each of us. So we've gotta work on that one even harder! (And be very grateful that at least they wanna spend time with us!)

Lizzie threw the girls an early birthday party and gave them these fab wigs (below) that they've barely taken off! Tone and I are both suffering such mental traffic jams that today I was arranging a playdate for the twins for next Saturday...and totally forgot it would be their birthday! Argh! Great mom! We were talking about it at school - how we adults have so much on our minds that only gets processed while we (try to) sleep or in conversation - whereas with kids (particularly girls) they role play the new stuff they're learning and process it in a simple, fun way. Like on Sunday at the Patons the girls turned Bella's room into a hospital ward - and they used the office swivel chairs as pretend wheelchairs to get around. And a couple of parents have mentioned that their daughters have been doing the same with their friends - playing hospitals and taking turns being Tara. (When Tara plays she pretends she's someone else who's had a wildly dramatic accident.)

So we're off to Broken Head tomorrow - just south of Byron Bay - to relax, rewind and spend a day chilling with the girls and their cousins who are camping down there. It's a big day for Australia - Anzac Day - to honour and remember our soldiers who sacrificed their lives in World War I. Thank you! We're loving our lives - the freedom - and it wouldn't be like this without brave men (and young teenagers, Cassie informed me today) like that.

Surprise, surprise

2008-04-19T15:48:00.009+10:00

So Tara was busy putting the milk in the fridge early yesterday morning - and turned around and there was Lizzie Loo (one of her beautiful godmothers). She burst out grinning and hasn't stopped since! Lizzie's flown in from London for five days - proving to Tara that dreams DO come true! (Coz Tara kept wishing that Lizzie Loo was here to see her stump and share in the experience - Lizzie's the one she'll phone or email when she's down, and she's the one she wants to tell first when something fab happens too.) Sooooo special. THANK YOU Zack and Jorge for sharing, and Lizzie for flying all this way on your own! And I can't believe we managed to totally keep it a secret from the girls till Lizzie arrived!!!

Tara and Lizzie had a gorgeous girlie day yesterday - doing exercises, Baby Chino's in Tedder, nails painted at Aus Fair (with Cas and Jadie who can hardly keep themselves off Lizzie either), and sushi for lunch. Then a lovely walk on a very windswept Main Beach. Can't believe it - last weekend was SO hot and sunny...and now, typical, Lizzie's arrived and it's pure London.

Cassie's modelling graduation was last night - she was GORGEOUS and sooooo good - grinned at everyone and really connected with the audience - yikes, it's done great things for her confidence. And it was so fab for her to be in the spotlight for the evening. Also very cute afterwards - a bunch of kids were up on stage, walking the ramp, and Jadie wanted to join them - but was too scared...whereas Tara was just desperately excited to do it, tried to get us to put her wheelchair up on the catwalk (too heavy, whew!) - and then insisted on Tone and I taking turns holding her and striding (stumbling!) up and down the catwalk. And she was soooo scrummy - pouting and posing like you can't believe. It never entered her mind that anyone may stare at her leg instead of her face...not that she even cared if they were staring at her at all - she was just in her own world, vamping it and having the best fun doing the moves. She made us laugh so much. And of course now she says she wants to be an artist and a model. And you know - Jadie did really well in the end - she plucked up the courage to walk down with Tara and I - which, as we told her, was even braver than the others who had felt no fear.

Talking fear - Tara managed to sleep on her own on Thurs night which is a HUGE step - first time in her life. She said she didn't know it was going to be so easy. I had bribed her by saying she'd get a reward...but when she asked for it yesterday I told her (very boringly, I know) that the reward was the little voice inside her now that would say "I can do anything I set my mind to". But I don't think she's totally convinced! An ice-cream would've been better!

Lizzie's already had a couple of wheelchair experiences - yesterday a guy getting out of a taxi flagged her down to chat about Tara's leg and told Lizzie he'd lost his own leg in the Bali bombing. It's a pretty special world you get access to when there's a wheelchair in the family! And Ted phoned from New York to say he's noticing more people with prosthetics. This morning he saw a guy on a bike and wanted to stop him - but realised he didn't really know what he wanted to say or ask him. It's so true. We feel the same way so often.

One more sleep

2008-04-18T00:13:00.002+10:00

Tara's tucked up in bed and has NO idea about the surprise tomorrow! YAY! It's been a gorgeous past few days - playing with Ruby and Gracie. Had a divine barbie tonight at the cousins - Tara was apparently jumping on the trampoline ("like a frog" she said) before we arrived - farewell dinner for my mum before she goes to Syria and Europe. We've left Cas and Jadie there for a sleep-over (very excited) and told Tara we've gotta go to the hospital early tomorrow morning. We did have a few tears when she went to bed coz she can't bear to sleep alone. It's now after midnight and we're frantically tryna finish work, tidy the place and get ready for tomorrow's early start. (Oops. Just realised - we're waking up in about 5 hours. Argh!)

We've been putting the cream on Tara's wound - but not noticing much of a difference yet. Small prayers please! She's been loving having her bandage off in the shower and bath - altho' she can't put her leg in the water, she is able to clean it with a cloth - she caresses it and is so tender and sweet with her stump, really bonded so beautifully with it. She squeals with delight when we say she can take the bandage off. Very cute. Very gorgeous. I told her tonight that she looked like Marilyn Monroe before she was famous (when she was still Norma Jean Baker and had curlyish brownish hair) coz she was lying on the bathroom floor in a Marilyn-type pose - and she said "but I'm Tara Maria, not Marilyn. And I'm more interesting." Then she said maybe she was only interesting because of her leg but I told her there was heaps more - her spirit, her heart, her attitude. My mum overheard a great conversation between her and one of Alec's friends this afternoon. "What happened to your leg?" "It got cut off." "Why?" "I had a broken bone in there." "Oh, will you stay in the wheelchair forever?" "No, I'm going to get a pretend leg." And then they got on with playing. OK, OK, must sleep!

Slight Delay

2008-04-15T21:55:00.010+10:00

Oh man - went to the hospital today and Tara's wound hasn't totally healed yet. There's some dead skin/tissue that needs to come off - so we have to put this muti on every day for a week to soften it in the hope it'll flake off more easily. And we have to make sure the medical ointment doesn't spread onto good skin - or it'll kill that. Argh! Altho' luckily we have Doctor Tone in the house and he's fab at that kind of stuff. But blah - it means all the fun stuff like bathing without a plastic bag around her leg, or swimming - are on hold for at least an extra week. But Tara's not upset - she was just soooooo proud to show off her naked wound to Cassie - first time Cas had seen it without the bandage - Tara was just grinning at Cas who admitted "it looked very ugly in the beginning but once the nurse cleaned off the dry blood, it looks lovely Tara". Theme tune swirling round my head today is "Dead skin in the middle of your stump..." sung to Loudon Wainwright's Dead Skunk (altho' thank goodness it's not stinking to high heaven!).

Talking heaven, it's been a bit of a melancholy 24 hours. A good friend's brother passed away (and our thoughts are so with you M&C) and in a week's time today it'll be the 1-year anniversary of Paul's passing away. We've physically missed Paul a lot during the last few weeks - wish he could've been here sharing this incredible experience with us, even tho' we know he's with us in spirit. The girls have felt it too - Tara was sketching in her brilliant Lizzie Loo art book when it asked her to draw the person she most wished was on the other side of the telephone - and she immediately said 'Uncle Paul'. So we've decided we're all gonna write him a letter next week coz we know he'll be able to read them.

Also happened to pick up some old books and papers from my mum's place yesterday, and came across the farewell card her and my dad gave me when I left South Africa in 1990. In it my dad wrote "GO YOUR HARDEST!" (his caps) - and I think he's soooo right - for then and for now; and he'd be SO proud to see Tarakie's approach to life - she seriously couldn't go at it any harder! Or any funner (Ted's word)! So even tho' some melancholy moments meander into our days, it's like there's so much love in those moments for our special people and for life itself that the sadness evaporates and we're left with an overwhelming sense of joy and gratitude - actually celebration if that makes sense - for everybody and everything we've had and have in our lives. And we'll keep going our hardest - which is especially easy with all the amazing support from all of you - thank you, thank you for each being so, so special.

First Encounter with a Stranger!

2008-04-14T22:53:00.012+10:00

Had such a beautiful day yesterday. Sunny, blue skies, sparkling ocean. Tone and Gav surfed. Cousins played. And we encountered the very first person brave enough to come up and ask about Tara without just staring and getting misty-eyed! A lovely older man. He must've been watching as Tara wheeled herself up this steepish incline towards the beach, and then when she got near the top she pretended to roll backwards to scare me - and was laughing... So this man came up and said "her wheelchair isn't permanent is it?" so I said no and that she'd be getting a new leg in about 8 weeks' time. And he just beamed with joy - at me AND at Tara and said how fantastic she was and that she had such a brilliant attitude and he was sure she'd do so well with her new leg. And he stopped Tone to tell him the same. What a LOVELY guy! Just a face full of love.

So yup - Tara's favourite words are "don't help me" (or "can I play on my DS?"). Altho' - she's also not scared to ask for help when she needs it. She's very transparent. Never keeps a thought or feeling to herself. This morning in the car she was telling us how sad it makes her every time she thinks of these 3 little brothers we saw on an internet news item who have autism and can't communicate properly with other people...and as she was telling us, her eyes were just spilling over with tears. She's always feeling for other people - she'll notice someone across the road and say to us "oh look at the lady - she's so sad/worried/angry" - very empathic (or whatever that word is).

She was feeling very serene yesterday - she had the kokoi around her to protect her from the HARSH Queensland sun, folded her legs under her and said she felt like putting her hands together as if in prayer. Hence the pic above. Cas felt the same - altho' upside down!

LOVELY morning today with Monica and her beautiful children who were just amazing. And then the girls did a million things with Granny...who leaves for Syria on Saturday. ARGH! We'll miss her! Altho' she did give us back a VERY animated Tara tonight - no empathic, demure angel - just a bundle of energy and fire who couldn't stop talking! And Portia - she was very excited to get your message. She's hoping to get her new leg in the beginning of June AND she's gonna ask the doctor tomorrow when she can start swimming - hopefully VERY soon!

Crocodiles and Iguanas

2008-04-12T15:54:00.017+10:00

Whew. It's been a hectic week - heaps of work for Tone and I to catch up on plus major social life for the kids on holiday - including a fab day out with a Portuguese South African friend who owns a boat called Costa Plenty! Tara's bandage has been changed again - blue this time like her school house Acacia. Cassie had a mini-operation (local anesthetic) on her lip (she had bitten it and created a major sore). I'm sick. And Jadie went ice-skating for her first time ever!

Tara's getting super-fast on her wheelchair. So fab to see her speed up and then throw her arms in the air and free-wheel, yelling "I'm free!". She saw a little boy last night in a wheelchair at Surfer's Pardise (we did the most divine sunset walk) and she picked up some tips on doing wheelies. Yikes! It was quite interesting - Tara noticed that his amputated leg was already healed but that he was still in a wheelchair & she said it was probably because his leg was bent - so it was like a reminder to her to keep doing the exercises to straighten her knee - because without that capability she'll never walk. Actually she's been so good at the exercises that we're having to put packets of rice on her leg to make it a little harder. She realised this morning that she thinks she's forgotten how to walk. But that's what the weeks ahead will be all about - learning how to walk again.

Tone says he keeps seeing wheelchairs everywhere now. So our world is slowly changing. Saw a dreadful thing that you can't go to the top of the Eiffel Tower unless you have two legs. Argh! Imagine being deprived of that amazing feeling that people travel across the world for. I felt sick to my stomach for a day - that horrible feeling of a life made smaller - but then I thought a) luckily Tara's already been up there; and b) maybe it's only wheelchairs that aren't allowed and prosthetics are fine; and c) the Eiffel Tower's my dream, not hers!

And not sure if you saw - there was a Californian guy who tried to smuggle some rare iguanas in his prosthetic yesterday. Funny, but annoying. It's the rare individual like him who then makes airports a nightmare for us coz they treat Tara suspiciously (you can't believe what a palaver it used to be with her brace in airports all around the world...except for LA of all places!). But anyway - it won't stop us travelling! And like Tara always says - we meet interesting people that way!

Tara's phantom pains - or tickles - continue. We have to not talk about them - otherwise they appear out of nowhere! A good massage seems to help - takes away the ticklishness, plus Tara LOVES a massage! She said last night that there's another feeling she gets occasionally too - she said she can't describe it but "if it was a colour, Mama, in my mind it's sort of black/grey". I thought that was so sweet that all on her own she came up with a way to describe it by using colour. Nobody's ever told her about that. But sob - I wish it weren't black/grey. I wish it were pink and yellow and fun. She is still on the phantom pain medication and the doctors have said this is normal in the beginning to have these feelings - and that over the next few months they should fade 'telescopically' (ie. the feelings begin where the foot used to be, and then slowly come closer to the stump until they're absorbed into it).

She's having an absolute blast though and not whinging at all. She was so excited to show Jadie her stump this week (at the bandage change). All her friends - and their siblings - have been incredible at taking turns to not swim, or whatever, so she's always having fun too. And she's talking more and more about walking - she's so ready! Another hectic week ahead of us - including seeing the doc on Tuesday for inspection...and a surprise coming for Tara on Friday. We're BURSTING to tell her! But we won't, we won't!

Well done Cam Cam for working out the Comments!!!!! Pic of croc (at local shopping centre this morning) to lure you & Jimmy's & Tia's and Maria's and everyone's family over to Australia! Thinking of little Jo (even more than usual) today. And here are some more pics of our 2006 Eiffel Tower day coz they make Tony laugh - it was the hottest day that year - so hot that they allowed people to swim in the fountains opposite the Eiffel Tower (usually strictly forbidden, like walking on French grass!)...so everyone jumped in with their clothes on and swam except the Panayis girls coz Daddy said "no, we've got no towels". Check the effect it had on Tara who was sweltering! (The pics make Tone laugh - Tone makes us laugh!)

A hug a day keeps the therapist away

2008-04-05T11:14:00.014+10:00

Whew, Friday was a big day. We raced off to Brisbane for Tara's bandage change...and forgot to give her the anti-pain medicine first. Argh! Had to turn around and go back home. Finally made it to the Royal Children's and it all went so well. We held up a pink kokoi between Tara (reading Princess Stories) and her leg so she didn't have to watch the nurses take the bandage off. The blisters are healing brilliantly. WHEW! And Tara actually snuck a look at the end and LOVED how her stump's shaping up. Looking good. Now wrapped in purple.

We saw a man with only one eye afterwards, and Tara asked "what happened to that man's eye" which was a perfect segue for another conversation preparing her for how people will say the same to each other about her leg. And she said "yes, we forget that my leg's not usual for other people because we see it all the time". So I was chuffed - she's got a handle on it...and then less than an hour later we experienced our first test of the really bad stares and it was me who failed miserably! We were at the art gallery - looking at the gorgeous Andy Warhol Marilyn and Jackie originals - just basking in this man's creativity and huge open-mindedness...when some really messy schoolkids walked in, stopped, stared, pointed, whispered and then even left their group to 'surreptitiously' walk past us and have a closer stare. ARGH! I wanted to kill them. And then they smiled at me afterwards in that patronising way people smile at wheelchair pushers, like we're so sanctimonious and the person in the chair doesn't exist. I just glared at them. And then I felt so bad afterwards. They were just doing what's natural. Obviously if they'd been a little better brought up they may have had the guts to actually say hi and smile at Tara, instead of treating her like an exhibit. But, but but...they were just curious - and there's nothing more fantastic in a human being than curiosity and a hunger to learn! So next time I've gotta find a way to engage them so they can be more honest and respectful in satisfying that curiosity.

There have definitely been a lot more adults also staring at Tara since the op - it's funny coz when she had the brace on everyone would stop and ask her what happened. Now they seem a little scared to ask! But you can see their hearts melt and a tenderness glaze over in their eyes. Just immediately. It's lovely, and also not. We'd HATE for Tara to ever be a source of sympathy for anyone. She's the opposite!! She's the kid you wanna be - someone who is so naturally happy and loving her life, and has a brilliant future ahead of her. What more could you ask for? Actually Tara was saying yesterday that all a kid needs is 5 or more hugs a day (Jadie says kisses too). You don't need feet or hands to be complete; or 10 toes to be happy. You just need to love...and to be loved, understood and seen for who you are. So when we hear people say (well meaningly) that they feel sorry for Tara we're learning to just ignore it and remember that that's not how people who know Tara feel. With those who feel 'sad' for her, it's more often a reflection of themselves - their own fears, feelings and stereotypical views - than anything remotely to do with Tara Balara! (That's not to say that Tara's experiences don't bring the odd tear to the eye...but that they're tears of admiration or gratitude rather than of pity.)

Anyway - back to yesterday! After Brisbane we stocked up with biltong, droe wors, Tex bars and Fanta Grape at the Springbok Shop - and then skidded into St Hilda's. AND WOW! The school has just been amazing. They gathered all the Years 3-6 together yesterday and gave them a little talk about Tara - and applied the same philosophy that we LOVE - telling the girls that there's no need to treat Tara like she's 'special' and needs a head start on anything. She's an equal and they must compete with her in the same way they do with each other. Cassie and Jadie were invited to the front to talk about Tara's condition and op. Apparently Cas just fell in love with that microphone and couldn't stop talking (but her teacher said she was FAB and very articulate). Jadie managed to squeeze in a word about the clowns, but she was also very good!

So when we arrived at the school with Tara, she felt like a movie star! We visited each of the Year 3 classes, and Cas's Year 4 class, and the girls were all just sooooo divine and so happy to see Tara. And she was SO excited to see them - she showed them how she tickles her toes that aren't there anymore and had an amazing time (and got heaps more pressies and cards. THANK YOU!!!!). The teachers were of course all brilliant - like an Oprah audience - they always look so good AND they're interesting!

And the best news is that the Head of Junior School has decided to swap the classes around for next term so that Tara can wheel herself into a downstair's classroom! That's just phenomenal and obviously we hugely appreciate the effort the school and all the parents are going to for us. Wow! Bit of a tearjerker. Sweet, sweet kindness. Mrs Kirby's letter to the parents about the class move ended with "given the attitude that Tara and her sisters, Cassandra and Jade, have demonstrated in the lead up to the operation I believe that we will see a very happy little girl return to school and delighted to be amongst her friends once again". SO true. And we're so proud of all 3.

Inspired by Warhol, Tara spent the evening doing stunning sketches of Tone and I (we weren't stunning - her pics were!) in one of her new books. Girls are on holiday now for two weeks. YAY! Altho' sob, it's first day today - and we've had to drop them off at Granny's (they were excited) so Tone and I can catch up on some of the work we missed during the week.

And just in case we sound totally self-involved - a HUGE congratulations to Zigs & Christian and Jason & Lisa whose life events this week (wedding and baby) were obviously a LOT bigger than ours!

Sore Limbs and Lizards

2008-04-01T21:01:00.006+10:00

Oooh - after a balmy day yesterday including home schooling with Granny and walks to the beach; today was a big bump. We took Tara thro' to Brisbane for her first bandage change and altho' Tone suggested we give her extra pain killers - we didn't (totally my fault for not absolutely agreeing with him! Argh! Always listen to Dr Tone!). We did check with the specialist but he thought she'd be fine...but, sob, those new bandages hurt her when they were getting wrapped around her raw red skin. So she hit a wobbly and shed a few tears, little darling. Held our hands tight and cuddled her Lizzy (pet elephant) and Joey (pet cat). The nurses said she was probably also in a bit of shock after seeing her leg without bandages for the first time. And I think they were right because a little later we went for a walk and she said "I'm not scared, but I think next time I won't look...until it's healed and better".

Interestingly it turns out that these sensations are actually good for her to feel (altho' we will be giving the drugs next time!) - apparently with all the nerves that have been cut in her leg - the brain now needs to rewire everything - and can't do so without feeling the different sensations. So that became a little exciting - the thought that as she heals, her leg will get to experience the feeling of things (like running water) as if for the first time ever. She wheeled herself around Brisbane city centre for the next hour or so, and took notice of every single different texture and sensation she felt as she rode over concrete, carpets, tiles etc. Almost like being blind and then seeing for the first time...And then we got wildly distracted by the crash of a truck getting caught underneath the pedestrian bridge opposite the museum. Hence the pics of semi-elevated truck, and subsequent fire engine! Quite exciting! (And the driver was fine.)

Cassie did a show-and-tell about Tara's operation today - and then this evening it was so cute watching each of the girls sitting on their beds delivering similar show-and-tells to all their soft toys. Tara's dolls got the bonus of being allowed to each touch her stump - but they had to be gentle and got told off if they touched the white bit at the end (where there are a couple of blisters) instead of sticking to the pink section. She also lay them all on their back and made them do exercises with her!

She had a fab afternoon with a visit from a schoolfriend - just what she needed (and she was such a darling - she gave Cassie one of her pressies with a beautiful note and drawings about how she could see that Cassie was sad and she just wanted to help her be happy). Her day ended with a gorgeous chat with her Lizzie Loo (coz Tara had phoned and left a message saying she wished Lizzie Loo were here) and a really funny conversation at dinner about how she used to think she was going to get amputated every year and how lucky she had thought lizards are coz they can grow new tails. But then Cassie said "yeah, but they can't ice-skate and ride bikes...and anyway, they can't grow new legs!"

Welcome Home Stumpie

2008-03-30T23:04:00.010+10:00

Yup - Tara's calling her leg Stumpie at the moment. Very Aussie of her! She's still loving it, doing her exercises and getting whisked around on the wheelchair by anyone under the age of 10 who walks thro' the door.

We're home after just 4 nights in hospital! Amazing. Our car was JAM-PACKED with flowers and balloons. Don't know how Tone saw thro' the rearview mirror (argh - maybe he didn't!). Have returned to even more divine meals in the freezer from Vets and Alex. Huge thank you! It was great last night to sleep thro' without hearing other children screaming and crying through the night because of the pain and the fear of being alone. To lie in bed at 3am and hear a child sobbing 'Mummy, Mummy, please help me Mummy, I'm so sore!" and know that their Mum's nowhere near is heartbreaking. Tara even noticed herself and told us how lucky she was that she had both her mum and dad there. The nurses claim that they're nothing like the nurses on Grey's Anatomy...but the one thing that almost all of them (except for one dragon!) had in common with Izzy is that they treat those kids like humans and not like patients...and they compensate as much as they can for the lack of a caring parent. There was a 4-year-old kid there who didn't know what to do with a banana. And had no idea what a toothbrush was for. We so developed the hugest respect for the staff at the Royal Children's Hospital - and will definitely do whatever we can in the future to help them - they are just so under-funded and yet provide such a vital, vital service.

So altho' we're getting so many beautiful calls and messages telling us that we've been thro' such a big thing - it's hard to feel anything but blessed and so fortunate to be in a situation where we have all this love and support from friends and family. And where we have a little 7-year-old here who is just SO excited and proud of her new stump, and can't wait to get a new leg. She never had a leg to stand on (no pun intended!) - so in a way she hasn't lost anything - she's only gained. And when you look at those other little kids in hospital without parents to tuck them in and cuddle them at night - then you know that Tara is so far from being disabled. It's those little children who are so tragically disadvantaged, not Tara. She has love, she has passion, she has goedspa!

We have a bit of a journey ahead - she has to stay in the wheelchair for at least 3 weeks - great fun on and off the loo etc! Then she can start using crutches in about a month's time (too dangerous now coz stump would swell if it was hanging down). Our visits to Brisbane begin again on Tuesday (blah!), teaching us to bandage her leg etc. - and they estimate that she'll get fitted for her new leg in about 10-12 weeks time.

Her first weekend with an amputation has been heaps of fun - she had such a divine time with Isla from school (who came to visit her in hospital) - Tara & Jadie actually scared Isla coz they screamed so loudly in delight to see her. And then the cousins came around last night & the Patons today. There was a brief moment when our hearts almost broke - coz all the other kids ran into the bedroom and closed the door - and Tara was left outside and couldn't open it. Argh! But that was soon sorted (they were planning a surprise for her) - and it was so beautiful a little later seeing her and her cousin Alec just leaning against each other on the bed giggling and playing with their DS's, two little equals. And again today - watching Evie wheeling her around - Evie (also 7) even chose so sweetly to not swim with all the other kids so she could play with Tara instead. The main concern for most people (kids and adults) seems to be that they may stare too much at Tara's stump - but you know, nobody stared at it more in the first 24 hours than Tara! So she's expecting that. And it's also amazing how virtually every kid has asked "so where's Leggie Loo gone?". Tara tells them: "to Leggie Loo heaven" - and they all seem happy with that and carry on as usual.

Here's a quick video of Tara mucking around in the hospital...

Quickie

2008-03-28T22:22:00.006+10:00

Not much for me to add coz Tara and Jadie have written about everything below (!) - the little 3-year-old girl that Jadie mentions was a sweet little thing who only recently lost her leg (when a lawnmower ran over her). Tara's off the epidural BUT did hit a bit of a bump at midday when the oral medicine hadn't quite kicked in yet - so the poor petal was in major pain, along with a very constipated tummy - so we had tears and love on the loo.

The girls' school continues to blow us away with their thoughtfulness. The Head of School left a comment on the blog today (!) and took the time to phone us. Very appreciated! Tara was so honoured. And the girls from school have sent flowers, balloons, lollies, teddies, emails AND have now been phoning Tara (coz the new ward lets us sneak the mobile in!).

Jadie and Cas saw the therapist today - apparently talked their heads off & said that while they get jealous of all Tara's pressies, they think she's gonna really need them in the next few weeks when they're at school or ice-skating etc. Alex kindly took Granny and Cas to the GC (for Cas's course early in the morning) and Gela played up a storm with Tara and Jadie.

Tara ended the day with gorgeous thoughts about how lucky she is to be learning so much about things that other people may never learn...BUT that "other people are lucky too for the special lessons they get to learn". And Jadie says she can't believe she's already so used to Tara's stump. She says she tries to shock herself with "wow, Tara had a big op this week and she doesn't have toes anymore" and then herself goes "yeah, yeah, but she has a stump". She (Jadie) dreamt last night that she had magical powers and fixed Tara's leg - and then Tara and Dad were running on the beach while the rest of us were swimming in the ocean with dolphins. And then she woke up and went "argh, too late!" but she said it didn't make her sad coz she just thought "oh well, it's the same thing - soon Tara will have a pretend leg and we'll be able to do stuff like that". Miss you Cas. Good night!

Missing you lots (from J to T)

2008-03-28T20:00:00.004+10:00

Hi Tarakie

I really liked the response on the blog that you did [below this one]. You answered every question I asked you. I really like your wheel chair! It's really cool too.

Are you exited about seeing Isla (from our class) tomorrow? I'm really excited about seeing her. Who do you like best sleeping with, mum or dad? I was pretty sad when Cassie had to leave to go back to the Gold Coast; weren't you too? The little teddy you got from Samantha is sooo soft and sooo cute too. Thanks for the Crunchy and the 3 snake sweets you gave me. Were the clowns you saw funny? Your magical tree is so amazing, so pretty and your flowers are so beautiful too. Is the wheel chair fun to go in? Did you like playing with that 3 year old girl? Did you have fun getting your photograph done? Now that you have your wheel chair you don't have to wee in a pan any more. How does it feel? Do you like watching movies in bed all day? The bed Tara was sleeping on was on level 4 now, today we had to move to another level it was on level 3. Do you like this bed room better or the same as the other one? Do you like getting a lot of chocolate and strawberry milk every day? What is your favourite balloon you got so far? What's your favourite movie that you have watched in Hospital? Now that you have the cords out of you you can have a real bath. How is your stump going? I missed you when Cassie and I went to Southbank with granny to the man-made beach. Sleep tight!!!

Love Jadie your loving sister xxxxoooo

Staying in the hospital

2008-03-28T18:09:00.007+10:00

Dear Jadie

Thank you for your blog post the other day. How are you? Here are my answers: It's nice weeing in a pee pan or whatever it's called and sometimes it's a bit annoying. I like staying in my bed but sometimes I just wish I could go out because it gets all covered and I get hot and I wanna go. I LOVE my stump!

Today when you went out with Mummy and Daddy for coffee, I was crying when you went because leggie loo was in pain - so Granny phoned Mama to come back. It didn't feel nice except I loved it when Mama was snuggling me again. Yes the cords were annoying and they made me very itchy and I couldn't scratch them - but now, today, I feel much better. I feel FREE because I don't have to feel all those cords and everything anymore - they are out. I can scratch again.

With the food - well i don't really like the desserts that much except I'm starting to like them because I'm getting chocolate cake and mousse. The foods are quite good and yummy. And I LOVE my DS. I think I'm very lucky. And I LOVE my portable DVD player; and all the flowers and balloons are lovely too to keep me happy. And I love the teddies and doggies and sweets that came with them, too! The doctors and nurses are REALLY nice. Especially I LOVE George - he's very nice. And now since I'm going with another nurse called Joanne - and she seems really nice.

I LOVE it that I have Leggie Loo because when I go to the hospital and everyone asks me things - I can learn how to speak to people and not be shy, so that's also fun. And I can learn also how to live with the pain. And I think it's good that I get to try medicine. It can really help me. I LOVE it in hospital - it is fun, except sometimes I have nothing to do because I'm not feeling good or in the right place to do it, like it needs paint or something. Sometimes I just lie in bed and snuggle.

I'm soooo excited that I got my wheelchair today. I'm so excited that I'm FREE now and I can go to places. And they took photos of me today and showed me clothes that Kimberley can wear - so I really want to buy new clothes for her - and I played with stuff that can stick on the wall and glass. What are you doing? And that was really fun playing with you today with the fairies in my new ward. I hope you're having fun. And on Tuesday I'm going to take off the bandage to see how my stump looks. I can't wait. And I can't wait to see you when you get back from showering at the house. See you soon.
Love
Tara xxxxxxoooooo

Bad hair day!

2008-03-27T21:16:00.006+10:00

Whew. Another good day. How lucky are we? It started really funny with Tara in major GRUMPY mood...because Kimberley (her new doll with the amputated legs) was having a bad hair day! She brushed and brushed her hair - but no matter how much we said Kimberley looked fab, Tara was like "ARGH! NO! She looks terrible. Her hair is SO messy!!!!" So she brushed and freaked - and Kimberley's one leg kept falling off...and then - whew - totally calmed down and said 'sorry Mama' a couple of times. And after that, no more bad mood. In fact - if anything - she was a clown most of the day - and is dancing in bed right now (kinda doing a rip off of a B-girl).

Lots of lovely visitors - including her school chaplain - how cool is that? And by the end of the day - after visits from Mr Dredge, Shane and Christina and deliveries of such divine flowers from Theano and Maria (Shane says Tara's life is like a little rose bud - about to open and blossom) - her bed was looking more like a magical toy shop! PLUS Son - your gorgeous gifts did arrive and no worries about no card - the girls knew straight away who they were from and all 3 were SO excited. THANK YOU!

The docs are really happy with Tara's progress and asked if we'd like her to go home tomorrow - but we've elected instead to let her have the epidural for one more day - so we'll be going home on Saturday! Can you believe it? So soon! And then she'll be able to chat on the phone!!! Right now she's bedridden and no mobiles allowed in here BUT we did do a quick escape with a borrowed wheelchair...altho' only lasted a couple of minutes because the batteries on her epidural machine went flat. Blah! We (Tone and I) escaped a little further afield - to the movies (Juno - divine!); Cas went on a school excursion to Brisbane Art Gallery (conveniently close by) and Jadie had Granny all to herself for 4 hours in the Science museum. And now we're all watching Elf together on Tara's new DVD player! (And we did need to do a quick 'look at your legs in the mirror/window' again tonight - and again it worked to solve the ticklish toe syndrome!)

We're sending our prayers and best wishes to the twins' beautiful and very special teacher Mrs Lewis. We wish you a speedy and complete recovery and the girls are gonna miss you sooooo much this year. You've been the perfect teacher for Tara this year and helped so much in preparing her for this week. Thank you. And a big HELLO to Year3R (Cassie says: "you're all very lucky because Mrs Raison is so nice and such a lovely teacher!").

Phantom Tickle

2008-03-26T22:54:00.004+10:00

Oh dear - the phantom limb pain has begun already - altho' it's a tickle rather than a pain. Tara was getting really frustrated this evening because Leggie Loo's big toe was very ticklish...even tho' it no longer exists. Thank goodness I remembered a recent news report that mirrors can be really useful - coz you're tricking the brain into believing its seeing the leg that's no longer there (coz right leg is reflected as left leg in the mirror, in case I'm not making sense!). BUT no mirrors in the hospital - apparently glass can be a hazard! So...luckily it was night-time - and I held her up, wires and all, in front of the window, so she could see her reflection. And amazingly, it seemed to help!

She's on some extra medication for her itchy, itchy skin - but other than that, she's cool - she wonders why God gave her a ticklish toe (but yikes, she had fun with that ticklish foot when it was around!) - but is totally aware that He has a reason and whatever it is, it'll "make me a better person". She was spoilt rotten with visits from Alex (thanks for helping with the wee!) and Joe and Trini who gave her her own portable DVD player...and gave us lots of laughs! It was great coz Joe said "tsk, people think they have problems - but look at Tara and you see how small your problems are" - which was a fab reality check for us. Sometimes we forget that this is a pretty big thing - coz we're on the inside where you feel so lucky to be living such an intense experience and where you're so aware that the rest of the world has far worse problems (which is all relative of course). But it was good Joe said that - coz we looked across at Tara and she was sitting on her bed, amputated leg lying in front of her, looking vulnerable and sweet and brave and gorgeous - and we got to re-realise just how big her heart and courage is, and how much we LOVE her! Stuart actually sat with Tara on Monday at her Goodbye Leggie Loo party and told her how brave she was, and apparently she turned around and said "well, you know, I am getting my leg chopped off - I have to be brave!"

She also got an amputated doll from Rehab today (no longer pre-hab!) - she's named her Kimberley and adores her, along with cuddly Pinky (from Maria & kids) who she squeezes so tightly. And she had heaps of fun sending emails to her school friends telling them how 'fantastic' her op was and that "I was a bit scared at first but then when I went in to the room where my leg was going to get chopped off, I was not scared at all". Last night she actually had such a blast writing to a friend and saying "well, it is night time here and I have no foot but a stump!" because she thought it sounded great and 'spooky'. (We'd just been reading a little book about how to be a writer - and she was taking story telling on board!).

She had lovely conversations today - checking that Leggie Loo has gone to heaven (thank goodness Cherie had already filled me in on the answer to give to that one!) and asking me whether the doctor cut off her leg with a 'chop' sound or a 'zzzzzz, zzzzz, zzzzz' (slow saw-ing sound) - we decided it was a very careful zzzz zzzz sound coz he wanted to take care to treat her leg gently and delicately.

Cas and Jadie are just lovely - cuddling and kissing her and each other (when they're not fighting over which DVD to watch). It's so beautiful seeing Jadie be true to her emotions - she's actually asking for hugs, saying it's just a 'feeling' she has that she needs lots and lots of hugs - so we're giving them to her in bulk! (A big step for a little girl who usually prefers to play up for attention than reveal how she's really feeling. Makes us very proud of her - this week has been soooo good for her. And Cas just is a natural Mother Teresa for sisters-in-need!)

Tomorrow they're gonna start weaning Tara off the epidural...plus we've been warned that Grumpy Tara is gonna make an appearance very soon. Argh! One day at a time! Tone's doing sleepover with Tara tonight - so I can't upload any new pics (coz I don't know how to) so today's pic is a blurry one from Monday instead!

Dolphins, Penguins and Stumps

2008-03-26T12:25:00.008+10:00

24 hours later and all's still great (epidural's in for 2 or 3 days so no pain!). Tara's been so cute with her stump. Last night she couldn't stop holding it, stroking it, and saying "I love my stump". Then about half way thro' the night - she looked at it and burst out laughing and said: "my stump's funny". And this morning, she looked at it again and said "hmmm, my stump looks strange" - but she was grinning, not upset by it. So I reminded her that it's gonna be a bit funny and strange for her friends when they first see it and that "they'll take a little while to get used to it". So she nodded and said "yeah, it's gonna take ME a little while to get used to it!" So that's good - I think she'll remember her own reactions and hopefully be more understanding with other people's reactions - coz of course everyone will be shocked the first few times. She also said "I know my stump doesn't look as good as other people's legs, but I still think it's lovely".

She's very focussed - has already informed us that she's on a mission to walk by the 3rd of May (her birthday) - which is something she's come up with on her own - nobody's spoken to her about aiming for a date or anything (altho' pre-hab did tell us that she probably won't walk before early June). She's doing physio already - and can do a fab 'wave' with her leg (bending it at the knee) - waved her sisters goodbye last night - sort of like a dolphin does with its fin (and then insisted on them kissing it too). I slept with Tara last night - she's the best company - very funny and interesting and cute. She's very busy - reading (3 different books), playing with her soft toys, receiving flowers, watching movies, DS'ing, eating heaps, chatting about life in general etc. She says "I'm SO lucky that the op went so well" and she thinks this op was MUCH better than the hospital visit at Christmas - coz this time they put her to sleep before putting any needles in. She's had a couple of bedwettings because the numbing medicine's so great (!) - but that seems better this morning - and they've reduced the liquid in the drip - because she's drinking so much herself. One nurse said they gave her so much coz they were expecting a 'dying swan' kind of patient. But they got the opposite. In fact the male nurse - George - volunteereed to be Tara's nurse again today coz he says she's such a "happy chappie". She is FULL of beans right now. Desperate for a wheel chair so she can explore the playroom etc. And Cas and Jadie can't wait (actually shrieking) to take her around. Tone's much happier today - good night's sleep plus seeing how happy Tara is - and right now he's surfing up a storm on Club Penguin (to earn points for the girls). Granny's gonna take the girls out a little later for a swim. She's booked into accommodation nearby for the week - huge help coz it means Tone and I get time alone with each of the girls.

Thanks again for all the DIVINE emails and messages. You make us wanna cry (happy tears!). Below are a couple of pics from yesterday - the DS Girls and then Tara minutes before being put under. And below is Jadie's very first posting to the blog.

From Jadie

2008-03-26T12:07:00.002+10:00

Dear Tara

What do you think about your stump? I guess the cords are quite annoying on your back and on your chest. Tara says she wants to be able to walk by the time it's her birthday witch is May the 3rd. I would like to see your stump. How does it feel being in the bed all day? How is the food they give you is it good or bad? How is it having to wee in a pan? Tara just got a DS. She was soooo exited about getting her DS. It made us laugh when mum told us that you said your stump is weird and strange too. Is the bed comfortable? Did you like the movie the princess diarys? I can't wait till you finish your Leggie Loo quilt!!! How are you in Hospital? I can't wait till you are in the wheel chair and you don't have to be in bed all day. Last night mum slepped with Tara this time dad is sleeping with you. You should see the Clowns that came while you were in the operation room. Thay were very funny! I hope you liked the DS. Did you Tara? Did you sleeep well last night? bye tara tiara!!!

LOVE JADIE XXX

Whew! The op is over!

2008-03-25T14:48:00.008+10:00

YAY!!!! The op's over and Tara's DIVINE! She was sooooo cute and brave and gorgeous. This morning she said she was a little scared and excited - and had a mammoth hug-athon where she just didn't wanna let go. Then we walked to hospital. Played on DS's. Distraction, distraction! Tone nominated me to go into the theatre (he's done it before and knows how heartbreaking it can be!). So in we went and Tara made me SO proud! She chatted to all the doctors and nurses in there. She BEAMED - honestly radiated pure happiness and excitement. They all kept commenting oh how beautiful she looked - "like a princess". She giggled at how silly I looked in that nurse get-up (shower cap etc.), then calmly looked in my eyes while she breathed the sleeping gas. The anaesthetist warned me that she would jerk a bit as she went under - but there was no jerking. They said it was the smoothest transition they ever saw - because she didn't fight it. She was so prepared and so willing. Our specialist told us after the op how fantastic she was - she didn't even flinch when he made his first incision (thanks to the tabs she's been taking the last few days) and she had hardly any anesthesia.

But WHEW - it was DIVINE to see little Tara get wheeled in afterwards. Even Jadie had said after an hour that she wanted to see Tara - obviously starting to worry. The 4 of us (Dad, me, Jadie and Cas) had a soduku competition during the wait to try distract ourselves - but we were hopeless - not one of us finished! Tara's first words were "please hug me, please hold my hand". That's what she wants the most - to just hold your hand as tight as she can. And second to that - she's already shown off her new stump to everyone new who walks in. It looks beautiful - very clean. She's calling it a stump (apparently some people prefer 'residual limb' - but I think that's a bit hard for a kid!). And she keeps wanting to look at it herself too. She can move her leg - and at this stage is in no pain (thanks to the epidural!) - just naturally drowsy. The therapist came around - but said it'll probably take a day or two to sink in.

And now she's back in her ward - Surf Side (Royal Brisbane Children's Hospital for those who asked) - tryna sleep, watch TV, eat and just get on with it. (And she has her quilt that she made with Gela last night tucked around her.)

THANK YOU SO MUCH TO EACH AND EVERY ONE OF YOU - from France to South Africa, Australia to Tanzania, America to the UK - you guys have carried us here and for me, this is a very beautiful day and a great relief (altho' I know we have tough weeks ahead of us - but those we can handle!). For Tone - he's such a gorgeous, gorgeous beautiful dad that he is having a slightly emotional day - but it just makes you love him more! And he said this morning as well, that without all of you we could never have got here in one piece. Wow! Thank you!

So many people around the world prayed for Tara. In fact we received a beautiful message from her school chaplain a few minutes ago (and they all prayed in chapel this morning for Tara). We have truly been so lucky to have lived through this amazing experience and to have felt so much love from all of you and from our little girls. And we'd like to thank all our angels in heaven - Paul, Theo Paniko (happy birthday!), my Dad, Dicko, little Jo and all the other special, special souls. Today's a great day on Earth!

Goodbye Leggie Loo

2008-03-25T00:14:00.011+10:00

What a gorgeous day! Tara's Goodbye Leggie Loo party was sooooo lovely - happy, fun and filled with lots of photos and videos of Leggie Loo. Very celebratory. Heaps of lollies, fudge and other stuff like champagne and OJ too! The kids were all great with Tara - talking about how they'll miss Leggie Loo but that they can't wait for Tara to be able to jump. And while the others swam Tara opened one of her many presents and made some fab necklaces (thanks Marnie!) that doubled as great handcuffs. Many, many phonecalls and messages. THANKS EVERYONE! Background music playing in one's head today is 'Goodbye Leggie Loo, tho' we had so many great times, it's time to say...', sung to the tune of Elton John's 'Goodbye Norma Jean'.

And then we packed up in a HUGE rush and headed off to Brisbane. No rain - wow! The only crisis all day was that Jadie jumped out of the car when we got here, and landed on some broken glass. A TINY cut...but the poor thing cried SO much, and sobbed that she wished she could be Tara or Cassie because they didn't have her pain!

Dinner tonight could not have been more perfect. Went to Gela's house - one of those beautiful old schoolfriends who you wish you could've gotten to know better at school, and then you get lucky enough to live in the same country! Well, Gela not only cooked a DELICIOUS dinner (actually - she cooked and packed enough dinners to keep us fed for the next week!) - but she also had a beautiful idea - for Tara to begin a quilt of her journey with her new leg. And so it began tonight with a goodbye to Leggie Loo. It was so beautiful watching Tara and the girls - as they became consumed with painting Tara's foot (actually feet because 'Big Foot' got a look in too) and pressing her toes against the fabric to leave footprints that'll last for eternity. Tara just blossomed. It was the perfect avenue she needed to express everything she was feeling. (She wrote: "Dear leggie loo, Happy Easter. I love you. I will miss you a lot. Thank you for teaching me things. You are lovely. Bye!!! Love Tara.") And even tho' Jadie was reluctant at first - both her and Cassie LOVED the experience (so much so that they wrote Gela a secret 'thank you' note that they hid in her fruit bowl to suprise her). Gela was meant to keep the quilt (it needs cutting up etc.) - but Tara so wanted it now and for tomorrow - that we let her bring it home - and she's now tucked up in bed with it wrapped around her. After prayers tonight, we all got to kiss and stroke Leggie Loo for the last time. And we made sure tonight we all talked about how much we love Tara and that even without Leggie Loo - she'll still be Tara and we'll still love her just as much. (Altho' we're now thinking that really it's just a part of leggie loo that's getting cut off - and maybe, really, we're keeping leggie loo!)

As soon as we know what ward Tara's in - we'll post it on the Blog. Our mobile phone access may be limited (hospital restrictions) - but we will be updating the blog and we're always available on email.

So that's it. Almost the end of a fantastic chapter of Tara's life - and hopefully the beginning of a brand new exciting chapter that's just as fantastic! Thank you so much to everyone for taking this journey with us. And one last time: Goodbye Leggie Loo! (Picture below was Tara's idea - she LOVES flower petals!)

Fab Day

2008-03-23T21:46:00.009+10:00

Tara said today was one of her greatest days ever. The Easter Bunny filled in her questionaire. Granny came for an Easter hunt. Donna Madonna, Fraser, Steve, Sian and girls were all down from Noosa - so we had a divine BBQ by the pool. And then the girls played at Tayla's where their mum painted their faces like 101 Dalmations AND loaned them a packet full of DS's, portable DVD player and many movies to keep them busy in hospital! And Tara loved hearing from Ruby (see below). Happy days! And Happy Easter everyone!

For Ruby in London

2008-03-23T20:57:00.001+10:00

Dear Ruby
I feel a bit scared and exsited at the same time. thank you. Today I went on club penguin and on a friends DS. How are you? I am taking some tablets. I have to do some exercises for leggy Loo. What are you doing in London? I hope you are having fun.
Love TARA xxxoooxxx

Much Better

2008-03-22T23:55:00.005+10:00

Just a quickie to say Tara seemed much better today thank goodness; and Cas and Jadie came back rejuvenated from a lovely time with Granny. Whew! All 3 spent the afternoon making secret cards and presents for each other, and for the fairies (full moon night) and the Easter Bunny. Here's part of Tara's note to the Easter Bunny:

And here's a super-short video too - of Tara today. Just press play:

Sick kids and Pixel Chix

2008-03-21T21:45:00.009+10:00

Argh. It had to happen. Tara's sick. Doctor came around today and she has an inflammation of the throat, fever etc. - so now she's on antibiotics to try and knock this on the head within 48 hours. Otherwise the op will be postponed. So typical! Maybe it's good tho' - because it's like that saying "you always want what you cannot have" - and suddenly the threat of not being able to have the amputation on Tuesday makes us really, really want that amputation NOW please!

The nerve-numbing medication is also getting stronger every day (from one a day we're already up to 4 a day). It's still tough - doesn't taste great - and we've discovered it's not good to laugh too much before we take it - or the powder flies everywhere except into her mouth! It has its own side-effects like dizziness and headaches that she's definitely feeling, separate to the flu. And she's turning into a cuddly koala who doesn't wanna be left alone for a minute (which is much better than the side-effect we've been so warned about - of unfriendliness). Shame - this morning she was so out of sorts. So we pulled out a pressie that Giorgio & family had sent her for next week - Pixel Chix Roomies, and it changed her life! She's been very happy the rest of the day! Even when I sidelined her for a minute to do a reading comprehension and it coincidentally was all about a boy going to hospital for an operation - and apart from it being his ear that was sore, not his leg - it was all so true to her - that we have to go in on Monday afternoon; the op on Tues early morning etc. So it was quite cool - gave her a chance to talk thro' it all again - how she'll be put to sleep and everything.

Tone's walking around like a leper with a mask over his face so he doesn't make Tara more ill. And naturally one of his main computer's crashed coz there's always gotta be more if you think you've got heaps on your plate! He nearly cracked. And there were no Pixel Chix for him! But instead he tried the "looking up at the heavens and saying, with wide open arms and heart, THANK YOU" tactic! And sounds crazy - but he felt it, and totally lightened up.

Jadie and I found obscure reasons to cry. And then Granny swooped in and took Cassie and Jadie away to swim and have FUN and sleep over at her place (and not get sick). And we did our love circle in the bathroom with them on the phone and Tara in the bath. Please, please, please let Tara get better FAST! Please also let Uncle Daven recover quickly and successfully. And Mandy's dad. And happy 40th to Jorge and happy birthday to Anitakins and the Witts twins. And a beautiful Easter Weekend to everyone. Here's an Easter pic on a plate that Tara's done for her class - missing them already!

From Tara

2008-03-21T10:27:00.004+10:00

Thank you YiaYia and Bapou for praying for me. I hope you're having a lovely time in Africa.
Thank you Zack for writing a lot. Thank you Janet and Lisa, and Lisa and Jason, and Manuella, Tony, Ted, Tia, Lizzie Loo and everybody else who has supported me. I'm very happy. I love reading the comments.
I am having a Leggie Loo party on Monday and I might get a DS. I can't wait for my DS.
At first the medicine was a bit annoying and then it was okay. A girl in my class is coming to visit me in hospital.
I hope you are all having fun.
Love Tara

Carry me like water

2008-03-20T16:35:00.007+10:00

Thank you so much to everyone yesterday - Thea Androulla, VeeVee, Gela, Cam, Steve, Christine, Ted, Lisa, Jamie and on it goes - like a river of friends from every corner of the world (UK, USA, SA, France, Aus) you carried us like water thro' the day. And we just floated and drifted...and made it!

And now of course life's thrown a new curveball - Tone's got flu. There's no ways Tara can have the op on Tuesday if she's ill. He's off to the doctor now - and we may have to quarantine him for the next couple of days! Tara's eating heaps of oranges to fight off his germs! Also not fab for Tone to be feeling ill at the moment but c'est la vie!

Last day of school today and Tara was very excited to tell all her friends it would be the last time they saw Leggie Loo (and the entire classroom was a bundle of excitement around Tara this morning). She did a drawing on the whiteboard last night (pictured here) of Leggie Loo. It kinda looks like LL's going to heaven - sort of floating between the ground and the sky, but she said it's just decoration and I'm reading too much into it! Note how her new leg on the left has painted toenails! (Not sure if it's obvious that you can click on any of the pics in this blog to see them enlarged? It seems the Comments aren't too obvious either - well done Janet! - for those still battling, you need to click on 'Anonymous' or 'Name' after writing your message, otherwise it defaults to Gmail and if you're not a Gmailer, it won't go thro'.)

Medicine time last night was a FAR happier occasion. This time we sat on her bed in the bedroom, nice and cuddly, and she swallowed the powder like a pro - and is now totally excited about being able to do it tonight all on her own.

The specialist called today - he says Tone has to stay far away from Tara and we all need to stay positive. He also said he couldn't be happier with the anaesthetist we have - he says she's the first one he would choose for his child, and she's the one he used for his wife. And the anaesthetist herself phoned - and she's soooo chuffed we're at the Royal Brisbane - she says we couldn't be at a better place for Tara's amputation. And - argh (an excited argh!) - the next time we speak to the two of them will be on Tuesday morning!!!!

The countdown begins

2008-03-19T09:32:00.015+10:00

Oh my nerves - it's all go. The Melbourne visit was good - but the specialist had no secret miracle cure, and said Tara's condition is one of the most difficult to fix with years of painful surgeries and often followed by complications, without much hope of success. And even in the best case scenario she'd be left with a short and weakened leg that she couldn't run on. He reiterated that the best time to have an amputation is as young as possible...but that the downside is possible overgrowth (when the growing bones push through the stump and require shaving down) - but he said this is more just an inconvenience (not being able to wear the prosthetic coz of pain, having to have a small operation) than a reason to wait till she's older. He also confirmed what others have said - that the great thing about Tara's condition is that she's not in much pain now - so her phantom pain (the pain amputees often feel in their missing limb) should not be too severe. And then he said the fab f-word - he thinks Tara will FLY with a prosthetic. (And Tara found a lucky penny when she walked out of his office!)

I asked Tara how she felt after the meeting and if she wanted to try to save her leg and she said 'no ways. It'll be too weak and hold me back; and I really want something strong.' Tone and I swam and did a lot of exercise. Took a lot of deep breaths. This is probably the hardest choice we've ever had to make in our lives. When you want to cry, just swim another lap, take another deep breath. And be calm...and it works. You feel your way through the pain - instead of running from any of it, or burying it - just let it all flow through your mind, body and soul; and then you start to see the good things again, the reason why she's having the op...and you start to get excited for Tara again!

So yesterday afternoon we met with the girls' teachers to discuss work for them to do while we're in hospital. We also wrote a little note for the parents in Tara's class letting them know what's going on (altho' it sounds like most of their daughters have already told them!). And last night she had her first pre-op capsule. It's a very strong anti-epilepsy medication actually - but it works to numb pain...and is used to try prevent as much phantom pain as possible. It was heartbreaking. She tried so hard to swallow it, but finally spat it out, and then sat on the floor in the kitchen sobbing. So we opened it and took the powder out - and gave that to her on a spoon. And after that she was so much happier...and said it wasn't so bad at all. But the heartbreaking thing was how she was hugging Tone afterwards and saying 'sorry Daddy' when she had no need to apologise, little petal. (Pic here of Tara and Dad in Melbourne!)

Jadie and Cas were awarded certificates in assembly yesterday, plus Jadie won her form's Easter colouring-in competition - which was fantastic timing - for them to get a little light shone on them when the focus is narrowing in on Tara. And I had the privilege of working on a client friend's photos that he's just taken in Israel of Jesus' tomb and other religious places that just seemed so significant with Easter coming up.

Jadie and Cas are secretly doing drawings, booklets and banners for Tara's Goodbye Leggie Loo party (and Leonard Cohen's song keeps playing in my head except I hear "Goodbye Leggie Loo, it's time that we began to laugh and cry and cry and laugh about it all again..." instead of "Now so Long, Marianne, it's time..."). Gorgeous Karen from Paris sent some divine little heart-shaped frames - the girls want to take photos of Leggie Loo surrounded by petals, and put them in the frames.

Today's main pic of Tara with Jean-Luc. He was telling Tone how he's never done anything like this before in his life (raising funds for Tara) - he's usually focussed on his own mission - yet now he's devoted so much time and energy to Tara and is continuing to do so - but he says the experience has been amazing. Isn't that so special? A little kid can spread some magic - and a grown up can spread and inspire even more...

And on a lovely light note - I keep meaning to include this link to a great Adam Hills' column (he's an Aussie comedian with an artificial foot).

Melbourne Magic

2008-03-16T18:25:00.009+10:00

Tone and Tara flew off to Melbourne this morning to see the last specialist tomorrow morning. I think from the moment they arrived there they've been smothered in love and attention - I spoke to them for a few minutes on the phone and it sounds magical. Jean-Luc and Louise have been looking after them beautifully - they were ensconced in a Thai restaurant when I called. And Tara's very excited because one of the bike shops in Melbourne has given her an amazing new bicycle (through Jean-Luc and his special fund for Tara)...which will be the first two-wheeler she ever gets to ride! (With the brace she was only ever able to ride a bike with trainer wheels.) Apparently Tara didn't stop grinning. She and Tone will also get to see Tone and Phil, the fabulous Jen Pinder and maybe even JT who happens to be over from LA for a quick MTV shoot.

Jadie, Cas and I had a fantastic day with one of their school friends; and then knifed our way into a Hairspray DVD (stupid shop locked it!) and listened to that brilliant line from Christopher Walken when he tells his (kind of overweight) daughter to enter the dance competition and follow her dreams, even tho' her mum has tried to dissuade her because she didn't wanna see her daughter hurt and rejected. You gotta risk all! It reminded me of a high school girl we met in Noosa who really wanted to be an entertainment journalist - so she was asking me for tips on making it in London - and her mum kept interrupting to say "but darling, don't be unrealistic; you'll just get your heart broken". Whew. Very relieved our mums never did that! Like Kahlil Gibran says - the higher you aim your bow, the higher the arrow will fly. And we've gotta bear that in mind with Tara (and all kids) where it's so tempting to wanna protect her from rejection or failure. Thank goodness she's feisty and goes for it regardless of what we say half the time! OK, now we're off to get our own Thai...

Therapy Things

2008-03-13T12:34:00.013+10:00

Yesterday's Bris-Vegas trip was great (altho' of course it rained on the way). The therapist spoke to each of the girls individually. Cas was most interested to know why the docs can't give us leggie loo afterwards to keep (she loves her mementos) so Cherie explained to her that leggie loo will be cremated along with a few other people's body parts (argh!). Jadie did her best to distract Cherie from talking too intimately about anything. And Tara zipped in and out - Cherie says she's very prepared and ready for this and didn't need any therapy at all.

Cherie warned Tone and I that the medication after the op is likely to make Tara quite grumpy at times - but Tara's VERY cute when she's grumpy, so I think we can handle that. She also said there is usually some grief experienced afterwards, and once she heard how much leggie loo is loved - she suggested we have a Goodbye Leggie Loo Party with the family. I wasn't 100% sure but we chatted on our own with Tara and she's keen to do it, and to keep it small because she doesn't think it'll have "much meaning" for other people. So we'll do that on Easter Monday.

Tara's physio was very happy with her progress. In fact it was quite exciting being at pre-hab for a change because they were all sooooooo impressed by Tara's demeanour and physical condition that they're so excited and can't wait for her to have the op. They say they're looking forward to working with her after the op and watching her gain so much freedom. They reckon she'll fly! Apparently it'll be 10-12 weeks before she starts walking...it's gonna be AMAZING to see Tara take her first steps!

Tone went to Noosa afterwards (for business and fab gourmet pizzas with Giorgio and family) and we girls trained it back to the Goldie, got a lift with Vets (thank you!) to school, and arrived just in time for drama...which was perfect coz Trixi the Clown visited!

And then home to watch Mr Bean (thanks Lizzie Loo - so divine to see South of France!!) - and read some FAB emails from two of the wildest, most inspirational girls you could ever meet...who live in such different parts of the world - Katie in Winchester and Janelle in Arusha!

Nommer asseblief / Numbers please

2008-03-11T22:59:00.006+10:00

Oh dear - Tone deleted ALL his contact numbers today. By mistake of course. Please could each of you send all your numbers to us at: info@bluex2.com

Tara and Jadie's class presented a beautiful chapel service today. I got a little teary afterwards when one of the mums asked so earnestly if there was anything she could do for us - it's so funny. I'm so not sad (or not that I'm aware of!) but that pure, pure kindness and caring just kills me everytime...in the most beautiful way. She also summarised our situation so well - how it's absolutely harder than anyone can imagine, and at the same time so much easier and more joyful than anyone thinks. Pic today of Tara in chapel with one of her BFF's (Best Friends Forever).

Tara got a little skin infection on her leg yesterday and RACED to put cream on - because she knows the op will be postponed if there's any infection...so a great indication of how much she wants this. And we read a book tonight about a mermaid who wanted legs so she could dance - but once she stood on the beach for the first time, she kept stumbling...and so we had a lovely whimsical conversation about how Tara will be a lot like that mermaid when she first puts her leg on.

BTW - thank you so much for the lovely emails and comments that touch on our parenting - but you know (and we know) that every single one of you - our friends and family (even Ted!) - are amazing parents or care givers yourselves, and would be behaving exactly the same way if you'd been given the gorgeous gift of Tara Tiara. But still - it's SO great and so necessary to get that positive reinforcement, so thank you, thank you Tia, Gussy, Jason, Lisa and everyone else.

Lizzie and I were talking (well, emailing) about how special the 25th of March sounds. Just a great date. And turns out it's not only going to be Greece's and Tara's Independence Day - it's also The Feast of the Annunciation (when Gabriel appeared to Mary to tell her she'd been chosen to be the mother of Christ) AND it's Theo Paniko's birthday - so we'll be thinking of him too and remembering his beautiful smile, and praying that he and the angels are smiling down on us too.

Nick said a fab thing today - "I suppose it's easy to be normal and hard (and painful sometimes) to be extraordinary".

Tomorrow's a day in Brisbane with the therapist - individual sessions. And maybe the doll amputation...

Our other life and Heather Mills

2008-03-08T16:10:00.020+10:00

Oops - one problem with this blog is it conveys the impression that we're consumed with Tara's leg 24/7...when actually it takes up only a small part of our day. The only reason the blog focuses on Tara and her leg is to provide updates in the easiest way possible for everyone who's kind enough to ask. And to not bore you with all the other stuff!

But in real life - we're pretty hectic with full on activities like everyone else. Just in this past week we've spent an evening out at the most divine organic pizza restaurant that Geoff & Jen discovered - it feels like you're in Africa, or at least Nimbin, with a dirt courtyard where some guys play drums and a girl does fab fire dancing. Tony had a Fiji surf reunion in New South Wales. And the girls sang beautifully in the school's Twilight Concert. Their afternoons were filled with gymnastics, choir, gardening, drama (Tara does all, except the gym, hopping on one leg).

We've played on the beach (this morning we got caught in the most divine rain storm - we ran for cover in the coastal fairy forest and could hardly get Cassie out, she just loves that wild weather so much). There's also been swimming in the indoor pool (it's bigger than the outdoor for training), many lattes in Tedder Ave or Ferry Market; heaps of work and client meetings; lots of homework, monopoly, playing at Granny's, building hide-outs with cousins, singing in Church, sashaying down a modelling ramp (that's Cassie); reading Pierre's biography (a wonderful and major trip down memory lane!); and we squeezed in a fantastic night out at the Patons (Tone's still dizzy!) where the 'chicks' put on a fabulous show to the beat of High School Musical 2 (Jadie doing flick flacks, Cassie modelling, Tara dancing amazingly, Bella photographing, Lily grooving and Evie spinning everyone into TV sets and tables!).

And that's just in the last week. In between all of that - there has naturally been Tara stuff and a great meeting with Tara's future prosthetist - which was fascinating for Tone and I, but Tara almost dozed off. She's far more focussed on school than her op - we had to postpone Friday's meeting with the therapist to Wed coz she didn't wanna miss drama, French, Art and RE.

But so - that's a slice of what our life's really like - a mixture of a million things - which I'm sure you're now relieved to know you don't normally have to hear about! But just in case it seems we're in a tunnel heading straight for 25th March with nothing else on our plates! We're not! What a luxury that would be!

On the Tara front - her very Aussie prosthetist told us a fab story about a leg he made for Heather Mills about 12 years ago and how sexy, determined and persuasive she was back then (his exact words: "I tell you mate, she could hitch a ride off a dead man!"). He's a fab guy - works with the Australian para-olympic guys and has photos on his walls of amputees skiing, cycling, hiking, doing EVERYTHING they set their hearts to!

Lots of love to everyone. And thank you for all the beautiful messages - they fill us and the girls up soooooo much - like little flowers, we blossom every time we get a new one to read!

So how are you feeling?

2008-03-05T11:43:00.005+10:00

That's the question we get asked the most. How are we feeling? Well I always wondered why we chose to put the swinging Tara pic at the top of this blog - when we've got so many other more beautiful pics of her...but we've now realised it's because that pic so aptly captures the feeling - totally excited...but just a little nervous! And it captures Tara - that even tho' she felt those feelings while swinging in the trees at Cap d'Antibes, she still did it...coz it was more fun than not doing it.

Tone was saying yesterday how she just has this amazing acceptance of certain things. She doesn't waste energy tryna fight what can't be won or tryna resist things she'll eventually have to accept - instead she harnesses her energy and goes straight there - to acceptance, and then totally channels her energy to make the absolute most of whatever it is she's had to accept. It's like she intuitively lives by the Serenity Prayer ("God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference etc...")

Another question I keep meaning to answer is whether Tara's amputation will be above or below the knee - it's below!!! That's one of the reasons why we didn't amputate at birth - so that her knee could grow strong enough to support a below the knee amputation. I think below the knee amputees call themselves BKs...

Below is a conversation we taped with Tara, Cas and Jade to answer many questions about how they're all feeling...

A Conversation with Tara

2008-03-05T11:30:00.009+10:00

We pinned Tara and her sisters down and had a conversation about the things many of you ask about. These are excerpts:

So Tarakie, how did you feel when the lady phoned to say your op is going to be on the 25th of March?

Well, a little bit excited. And I can't wait!

What are you the most excited about?

Getting my leg cut off and getting a pretend leg and then I can go backwards more easily and do more things - like swimming, running, skipping, ice-skating AND wearing two shoes! I've never worn two shoes before.

And Jade & Cas - are you two excited?

J: Well, I'm kinda sad that leggie loo's going away.

Tara, are you gonna miss leggie loo?

Actually, I don't know because it hasn't happened yet. But well sort of, but I'm so excited about getting a bigger leg and a stronger one. Leggie loo's been a little naughty because she stopped me doing a few things. She's a baby [holds leggie loo up to her face, like you'd cradle a baby].

Do we all love leggie loo?

All: YES!!!

Dad: I can't wait for you to get your prosthesis Tara, so I can chase you up and down and make you run and sweat so you feel your lungs aching.

[All laugh. Tara very excited.]

Now who's looking forward to the week in hospital?

Cas & Tara: ME!!!

J: I don't want to. I want to go to school. I want to stay at Granny's house and she can take me to school.

Well - good news - there's a school for kids at the hospital! You could go to that. And after a week, it's school holidays so you won't miss anything.

Tara, why do you think God gave you leggie loo?

Because he thought I would be the right person to get a leggie loo, and He thought I'd do well with it.

And do you think you've done well with it?

Yes.

Dad: You've done phenomenally well.

Mum: Amazing. And your sisters as well. Do you think God planned for this family to have us 5 specifically in it?

Yes.

We all help each other. And Tara, have you noticed that by having leggie loo, it's allowed you some opportunities to meet people...

...and to experience things.

What kind of things do you think you've experienced that are different to other people?

Going to hospital and staying there till Christmas Eve. And I got to experience crutches. And I got to experience the brace, and the plaster on my leg. And when you go to the airport, you beep [at security] and you get to learn things sort of because they stop you and talk to you and tell you when they've been in hospital.

Has it ever annoyed you? People stopping you?

Sometimes when people ask me too much times...sometimes when they forget and they ask me again. And sometimes I go somewhere and lots of people ask me. I remember once at Budds Beach when I was walking and these ladies were chatting and then they stopped to ask me...

Wow, you remember that day. There were actually lots of people and you asked why they were staring at you & asking questions, and you told me you wished they would stop. And we had a long conversation about how they don't mean to be rude - but it's the first time they've seen a brace so it's not familiar to them...and that once you answer their questions they'll understand it more and get used to it, and then they'll stop staring. Just like you stare at something that you've never seen. And we also discussed how it's much better when people ask questions because they're being honest - instead of those other people who pretend they can't notice it.

Dad: And it's important for Tara to remember that when you have your prosthetic - people are going to still ask you questions because they'll notice it.

Mum: Until you're fully grown your pretend leggie will be a slightly different colour.

Cas: Why? It'll look ugly!

Dad: When Tara's 18 there's a 'skin' called a cosmesis that we can put on that's the same colour, like Heather Mills, But it's way too expensive to get now while you're growing and would need a new one every 10 months. But remember the little girl you met who puts a stocking over her pretend leg so it looks more normal.

Cas: Hmmm, we could notice straight away!

Well I think Tara's been very patient with people. How do you do that?

It's easy.

And baby, are you nervous for anything?

No, not really. A bit nervous about my leg getting cut off - how it'll feel.

Are you a little scared it'll be a bit sore?

Yes.

And the pain doctor said that they'll make it ok, hey?

Yes, and they'll give me this stuff that makes it so it doesn't feel too sore. But it'll still hurt a bit.

And if it still hurts afterwards - what do you do? You tell us and then they'll come and give you a bit more medicine to make it not hurt so much. Always just talk.

So Tara - do you know why you're having an operation?

Yeah, because this thing [holding bend in leg] - it won't be able to get straight.

Would you like to say anything to your friends and family who've read your blog and sent messages?

Well, it's pretty nice...and thank you.

Do you feel special and blessed?

Yes

And you Cas?

Yes, and it's nice having a sister like Tara because then you're noticed and I like it when people come and ask me about Tara.

And for you Jadie?

J: I'm scared...that she's having her leg cut off.

T: Will you see the bones?

No, because they cut it while you're asleep and they sew your skin together before you wake up. Do you want us to try see some bones at the museum?

T: Whew, yes! Human bones?

J: And I'm scared to see blood.

C: And I'm scared it'll be ugly.

T: But look [puts her two legs together, which have a discrepancy of 7 cm and of which the left leg is pale because of having been in a brace and bandage all of her life] - this one's lighter than the other one now. They're not the same colour anyway.

It'll just take time to get used to. And we must all be honest all the time, ok? Remember the first leg is going to be horrible...

...yes, it's just for practising.

And with your next leg it'll be better, but it won't be an exact match. But you'll see how Tara can run around the garden with you, and do things she couldn't do before - and before long, you'll all be loving new cousin 'lou lou'.

J: This leg's skinnier - how will they fit on the right size leg?

Great question Jadie. We'll have to ask the prosthetist. And Tara must do her exercises!

Tara, what do you think made you be so brave? When you're scared inside, what do you do or say to make yourself feel brave?

T: I've never really done anything like that before.

C: She's always been happy and excited about new experiences. Not scared.

M: You're right. She just gets on with it. Remember when Tara was 2 and wouldn't let us help her on the tricycle? And it took her two hours non-stop to learn - but she didn't stop till she got it right.

D: And then she wouldn't stop cycling round and round next to Noosa River till we all got dizzy.

What's your favourite thing in the whole world to do?

C: It's to play with leggie loo [Cas helps Tara do her exercises everyday]

J: To go to school.

T: Well, I'm not really sure - there's LOTS of things I love - like making things, drawing, going on the computer [laughs]. I've just started reading 'go girl' books, and I love finding things on the beach, and I like going on crutches...and going fast!

OK girls - off to bed!

All: [shouting loudly together] BYE BYE. LOVE YOU FAMILY. THIS WAS TAPED IN 2008, MARCH THE 4TH, TUESDAY.

Yay - A Date!

2008-03-04T14:37:00.009+10:00

Whew. Finally. A Date: Tuesday 25 March. And it's quite cool coz turns out it's Independence Day in Greece...which is somehow semi-meaningful since Tara's half Greek and on 25 March her personal journey to independence begins!

We're meeting the local prosthetist tomorrow and the therapist again on Friday - this time for individual sessions.

Psychologically everyone seems fine at the moment. Tone got momentarily freaked when Rosie phoned with the appointment - kind of the definite-ness of it; Jadie and Cas nearly lost it yesterday when Tara got a pressie and they didn't - but she's promised to share with them; and Tara herself said to me this weekend that she wishes she could have two lives - her current life, and another one with everything the same except she has two normal legs and she can do magic...which was kinda upsetting coz she's never had a wish like that before - but it's because this whole process has taken so long - so she's been unable to stand on two legs for over two months now and has been experiencing that 'left out' feeling eg. when the kids play 'walking on water' (running from the side of the pool into the water and staying above the surface for as long as they can) and she patiently watches and laughs with them, and then finally says 'that looks like fun, but please can we play something I can do too now'. She could do that kinda stuff before Christmas so she's never really felt left out before. (And I know we could just not play the 'walking on water' game for a while - but that's just one example of many things!)

Plus, altho' Tara's doing the physio exercises with her leg - it's still getting thinner and weaker every day that this op is delayed because it's not doing any weight bearing. So, for me, thank goodness the op is only three weeks away!

Weekend was fab - and Tara and Jadie both met up with Tara's new penpal in the coffee shop on ClubPenguin's website - and then they went to Tara's igloo and had the BEST snowfight ever. You should've heard them laughing with TOTAL joy when they first spotted her penpal in the coffee shop - isn't that just divine - that that's what can make a 7-year-old SO happy!

Go JL Go!

2008-02-29T23:18:00.005+10:00

Totally stunned! News just in - Jean-Luc has already raised enough for Tara to get a swimming leg! That is just so, SO awesome - it means she'll be able to stand in the shower & walk on the beach with us in the evening. WOW, thank you!

Lizzie and Zack - Tara's replied to your comments with her own comments - just click where yours are...

Dancing in the rain

2008-02-29T22:26:00.004+10:00

It's been a nearly normal week. Tara's as cute as custard RACING around on her crutches - or running like a leopard on 3 legs (ie. crawling with one leg in the air - she competes against anybody who's willing to give it a go...and always wins). She's settled into a fab routine of making her bed every morning while hopping around on one foot - try it, it's exhausting (making a bed is tiring enough on two feet!). And last night she had a 'feeling' in her 'body' that she needed to draw a pic for her teacher - so she wrote a lovely message and did a divine pic - and today her teacher wrote her such a beautiful note saying that she's such a 'lucky teacher' to have Tara in her class & how special Tara made her feel - which is a real little gift Tara has - making other people feel special. The girls at school continue to be so lovely - bringing in a bandaged teddy on crutches, notes asking when Tara's "cool operation" will be so they can visit her etc.

Of course we still don't have the date for the op - Rosie at Reception was away today and lacking info yesterday. Ocasionally we get sooooo annoyed - but yikes, we're lucky to have such great medical facilities. Saw 2 such sad articles yesterday - about the number of homeless families in South Africa, and the sharp increase in child rape in Zimbabwe - and you just realise that really our children are blessed, as are we.

So while we wait we're learning heaps more - could now write an exam on endo- and exoskeletal prosthetics (altho' we're embarrassed to admit that we still don't know when it's correct to say 'prosthesis' and when to say 'prosthetic'!). And the month's delay has also given us time to see one last specialist before we go ahead. He's a friend of Philippa's in Melbourne, and renowned for his work with children. So Tone and Tara will fly down in 10 days' time to see him. We're sure he'll say the same as every other specialist has said, and we're very happy with our guy in Brisbane - but we'd kick ourselves if we didn't meet Phil's friend before the op - coz afterwards, it'll just be too late! (Thanks again Jean-Luc for helping make it happen! Pic today of JL during the triathlon last weekend.)

There are little things you learn about amputation that freak you out - like an amputated girl we met told us how she fell in the shower and her tibia pierced thro' her skin. Major pain! Major operation. And it's not just the painful things - but the dependency - two children we've met both mentioned how they have specially appointed aids that help them at school when they're too tired or too sore to move. That's not really the dream we had for Tara. We thought amputation = freedom! So...blah. BUT we are so totally aware that she will gain SO much more by having an amputation, and that having it will mean a LOT more freedom than not having it. But still - argh - she has such cute toes!

Heard a fab line on telly today - that having a child with an affliction is not about waiting for the storm to pass, but rather about learning to dance in the rain. And we have DANCED!!! And are still dancing! (Actually Tara's just hopped in, with her pyjama arms on her legs and is doing just that - dancing!) This one mum on the TV show also said how her biggest fear was that nobody would ever love her afflicted child as much as she did - and I remember us worrying about the same thing when Tara was a baby - but WOW - we couldn't have been more wrong. You guys have filled up our gorgeous little girl with SO much love, she genuinely bubbles! She is so adored by so many people. Just amazing. And she LOVES every message she gets - insists on reading them herself. She's promised to write something this weekend...after she's met her new Scottish penpal/e-pal on Club Penguin. New e-pal is daughter of fab UK author Fiona Gibson, writer of such books as 'The Fishfinger Years' and 'Mummy said the F-word!'.

Fab Prosthetic

2008-02-29T21:58:00.002+10:00

Here's a great video of Gill Hicks putting on her prosthetic legs. This is the type of everyday (walking) prosthetic we'll aim to eventually get for Tara. Initially she's gonna be getting a horrible (archaic) one that you put on with a buckle or elastic wrapped around your upper limb. But afterwards we'll try for this - we met a 12-year-old girl who said her life changed for the better once she got one of these. And it's kinda James Bond-ish to take off - you press a secret spot on the leg, and voila - it pops out of the pin. Yikes - they've come a long way since the wooden ones when we were kids! And apparently tin before that! Jamie shared such a poignant story with us this week about his father having had a tin leg, after the Second World War - and how they would use it to play cricket with in the afternoons. After his father passed away, while he was still a child, he says he found it so disappointing to discover that other adult men didn't have that same special leg that he could play with.

So many people have shared their intimate stories with us - it's funny and such a cliche, but it really is true that everyone has a story (ok, maybe not everyone - some are dull, dull, dull; but most people!). And so often - we don't realise what people are going thro' - like yesterday at Alec's school, a beautiful music teacher whose sister is dying, got shouted at for something pathetic by a petty little man who had no idea. Quite a few people (clients or old friends who've never met the kids) have told us the same - that they had no idea about Tara. They say we "never mentioned it" - which is so funny coz we never meant to not mention it; it just never came up & there's SO much more to Tara that one forgets there's something different - we're always 100% happy to talk FOREVER about Tara & Jade & Cassie - there's nothing off limits and ANY question is welcomed.

OK - here's the video:

A First!

2008-02-25T09:01:00.013+10:00

So divine - Jean-Luc came first in his age group in the Malaysia Triathlon on Saturday! (It's the race he dedicated to Tara). Wow and Congratulations! It was so exciting watching it on the internet with Louise and Julia (JL's wife and daughter). Julia brought Tara the most stunning cards that her whole class (including the teacher) had each made for Tara - filled with such lovely messages and gorgeous drawings. Thank You Julia's Class! We're going to decorate Tara's room with all the cards when she has her operation so they make her feel good!

For all those who've asked about supporting Jean Luc - his efforts are ongoing - he asks that any kind donations for Tara be sent to him at: JL & L Boulanger, 38 Ferrars Place, South Melbourne, VIC 3205, Australia. Cheques should be made out to Tara Panayis. It's been the kindest thing that Jean Luc has started this - because, as mentioned before, we would never have asked for anything - but for Tara's sake, it would be insane for us to not say thank you for any extra funds she can get. We look at our left legs now and go 'wow, this leg hasn't cost me a cent and it's lasted over 40 years!' while Tara's pretend legs will need replacing every 10 months or so...

A guy in JL's race, who's had an amputation himself, advised that it's best for the prosthetist to be present during the op - so we'll be talking to our specialist about that. Another interesting fact we've learnt is that the reason why amputees tend to suffer so much more during the heat (with swelling etc.) is that since we lose heat through our head and feet, one less foot means one less cooling mechanism!

It never rains...

2008-02-22T22:10:00.004+10:00

Tara's getting callouses on her hands from the crutches, and her knee was bleeding this morning from crawling over something sharp...and just in case that wasn't enough, she's now got tonsillitis! BUT she's as happy as a clam - the fairies visited last night (they always do around full moon) PLUS Julia, their schoolfriend from France, is here for the weekend with her mom - so the girls have been swimming all afternoon. Gorgeous endlessly sunny Queensland day. It's Julia's dad who is dedicating his Malaysia Triathlon to Tara tomorrow (see yesterday's entry).

You know - everyone's been so lovely to us and we're so appreciative - because we're very aware that virtually every one of you is going thro' something of your own that's either a loss or a challenge (or both) - so the fact that you've found the time to care about Tara is mindblowing. Thank you.

French Friends, Fun & Funds

2008-02-21T14:07:00.018+10:00

As mentioned yesterday, the dad of one of Tara's friends from l'Ecole Ponteil (her school in France last year) has made the most generous offer. He is dedicating his Ironman Malaysia triathlon on Saturday to little Tara (wow!), and raising funds for her new 'pretend legs'. He's giving a speech tonight (click here to download) and has also attached a short version of it in French and English if you'd like to pass on the information to anyone else.

Tara left an impression on Jean-Luc in Antibes last year when we were playing besides a freezing cold swimming pool, and a ball fell in. While we were all discussing who should be the one to get in the cold water - Tara just jumped in and did it.

JL's wife - a fab Melbournite - has also tracked down an extremely inspirational athlete, Sarah Reinertsen - who happens to have also had her left leg amputated at seven, and who Tara and the girls watched in awe on Amazing Race as she scaled the Wall of China etc.

To follow Jean-Luc's race live you can visit: www.ironmanmalaysia.com.my/home.html His race number is 441 (and his name is Jean-Luc Boulanger).

It's funny. In the English world, 'the French' have this image of being arrogant - but in real life (well, in the South of France for definite) - you couldn't meet people with more warmth and soul. Apart from JL, there's Christine (the girls' former teacher, who's learnt a lot of very useful English from Desperate Housewives) - she sends us beautiful CDs that she compiles herself, messages of support that could hold up a rugby team, and so much more. Yesterday we received a postcard from her and signed by 'toute la rue' (the neighbours in the street that make up our Antibes family) including Wolfie who helps us with broadband in France (and feeds us champagne), Angie who makes fantastic coffee (!!) and Richard the doctor who still makes house calls in the middle of the night...and smiles! Novels and movies about gorgeous French communities like the one in Chocolat are no exaggeration!

Pics today of Tara doing handstand on Plage Ponteil in Antibes (still with brace) & the girls with Christine's funny and wonderful husband Jac on his birthday last year.

The Date

2008-02-21T10:50:00.002+10:00

Um, still no definite date BUT bookings phoned to say they finally have all the necessary papers required to book the operating theatre etc. - now all they need to do is liaise with the various professionals required for the amputation, to find a date and time that suits all. They're aiming for sometime before end March.

Bit of a Bumpy Ride

2008-02-20T23:03:00.008+10:00

Whew. Been a mega-week of info load (not overload coz it's all interesting and relevant for us). Meeting children with amputations (whose beautiful families welcomed us into their private space) was a major step closer to the reality of life ahead - where once part of the limb's gone, it's gone forever and you'll never be able to just step into a shower or jump out of bed and stroll down to the beach. But then we suddenly realised (well, Sian and a fantastic prosthetist reminded us) - Tara never has! We lift her in and out of the bath. She crawls into the shower. And she was only able to jump out of bed because she slept with her brace on. As they pointed out, we probably don't realise how many of the things ahead that are now worrying us are things we've already lived with for 8 years without thinking of them as problems (because they haven't been).

So sure, life's gonna change and what that four-letter word 'hope' held for us - the hope that she'd one day walk on her own two limbs - will change too - to the hope that she has the freedom with prosthetics to do all the things she's never been able to do before - like run and skip and jump on a trampoline, wear two shoes and even wear jeans that we don't have to cut to fit around her bulky brace. And so much more.

So the week began a little heavily - with the visual realisation that Tara's leg will no longer end at her toes, and there was a definite moment (or more!) where we thought we're all gonna miss leggie loo so much we'd rather just keep it and Tara could use crutches forever! But then this amazing prosthetist from Sydney called and calmed us right down. What a beautiful, caring man. He can't make prosthetics for us because he's in NSW - but he still took the time to call us (I had emailed him) and talked us thro' EVERYTHING - like that trying to choose the 'best' prosthetic is like tryna choose the 'best car' - a Ferrari, for instance, isn't great for grocery shopping. He spoke about the importance of three things: comfort, function and form (how it looks) - and said we should relax, realise that the first prosthetics won't be perfect, not expect the 'Holy Grail', and use those initial ones as a benchmark for the improvements Tara needs next time around. He reminded us of everything she'll be gaining 'all things being equal' and gently put us back on track.

Prehab was prehab. The Chronic Pain Doctors (there were two) were less fearsome than their title; the physio was sick and absent this time around but the therapist was in - altho' she didn't amputate the doll (that'll come later)...but she did make a little book for Tara and a poster to take in for show and tell that goes thro' all the stages before and after amputation. And the girls laughed their heads off that Tara's gonna have to 'poo in a pan' during the first week in hospital. We met a gorgeous little girl who's just a year younger than Tara and lives nearby - also left handed and also loves crocs. And she wears a prosthesis on her left leg. The week was made infinitely easier by Shayne and Marco's hospitality in Brisbane, and Fiona cooking gorgeous meals & getting Tone into the Olympic pool nearby (healthy body, healthy mind blah blah blah).

Actually, talking healthy - a French friend of ours who's a triathlete has blown us away with his kindness - he's running in the Ironman Malaysia race this weekend, and is dedicating his race to Tara and raising funds for her prosthetics. It's something we would never, ever have asked for - but which will be such a HUGE help for Tara (especially if she can get the swimming prosthetic which would also allow her to then shower standing up!) that we could never let pride get in the way and say no, and instead can only say THANK YOU. We'll post some more details about it tomorrow.

Thank you EVERYONE for all your lovely messages!

Quickie

2008-02-19T23:26:00.003+10:00

Whew. It's been a non-stop couple of days with rehab, meeting lovely kids with amputations etc. - a rollercoaster of emotions and experiences. Will write more tomorrow - but just wanted to quickly update. Of course it's Tuesday and we still haven't been told the date. Maybe tomorrow? Tara's cool - she got a certificate award today for being such a great help during the swim carnival last week. Jadie and Cas got ribbons for doing so well in their races! And Fiona (who's up from Sydney) took them all for milkshakes this afternoon, and read them Madonna's new children's book tonight, The Adventures of Abdi, which the girls told us has a fab message that "everything that happens in life is for the best".

Tears, Cosmesis & Hicksville

2008-02-16T21:06:00.008+10:00

Here are a few little pics & text Tara did for her drama class this week - which give a great indication of her self-image: she likes swimming and going on crutches and is good at running! (BTW - she's always drawn herself like this - with both legs wearing shoes - even tho' she's never worn 2 shoes in her life. She's never drawn the brace - not because she didn't like it, but it just doesn't factor as important in her life when she's so busy drawing, swimming, singing and playing!)

We had a lot of tears on Friday night - from beautiful Jadie - who's upset that she's not getting enough opportunities to help Tara at school coz all the other gorgeous kids are helping so much! But after lots of very open talking - all were smiling, hugging each other and happy...and so appreciative to be in such a lovely class of such kind girls.

Some of the school mums have been telling us such sweet stories about what their children are telling them about Tara - how they've learnt the name 'leggie loo'; how they know she loves leggie loo because she plays with her little toes in class all day (a novelty since the brace was removed); and how she says she can't wait for her 'pretend leg' so she can run fast.

Latest news on the op is that it'll be end March - we'll find out for definite (maybe!) on Tuesday. In the meantime, our research continues. A bit scary at times - finding out about infections and things that can happen after amputation - that it's like a marriage, where the wedding really isn't nearly as important as the many, many years of marriage afterwards. Likewise - it seems it's not like it's over and you can 'get on with it' after amputation. Apparently there are things to watch out for - for life - including no long soaks in a warm bath! But we've also found a lot of good news - like that there's a prosthetist in Sydney who supplies Heather's Cosmesis (thanks Filipa for link!) which is a fantastic silicon skin cover, made to match your skin tone, that Heather Mills helped develop - you pull it over your prosthetic so your two legs match. AND it allows you to paint your toenails totally normally! Costs thousands of course (just like all the good prosthetics) - but it's so fab to know Tara's dream of painting her nails can come true! (So yes please Dominique, Angelo and Jo - Tara would love that nail varnish kit in a few months' time!)

We've also made contact with a great company in Hicksville (who knew Hicksville was a real place!) in the US; and have discovered that Queensland's best prosthetist is actually here on the Gold Coast!

We're going up to Brisbane tomorrow to meet a young girl who's had an amputation; and on Monday it's our next pre-hab meeting - with the Chronic Pain Doctor, and the therapist who'll amputate a doll with Tara, Jadie and Cassie.

Waiting, waiting

2008-02-13T23:34:00.007+10:00

Haven't wanted to update coz we still have no news on when Tara's operation will be. Flo (or someone similarly named) at the Bookings desk has been sick...

But the delay has been great for us to do a lot more research eg. pre-hab told us they'll be teaching us how to bandage and re-bandage Tara's 'residual limb' (amputated leg) to prepare it for the prosthesis (with the warning that a lot is hinging on how well we do the job). They mentioned that adults get a special sock instead which is a lot easier and more reliable than constantly bandaging. We've now discovered in our research that in other countries (and maybe other states) children actually get them too. Called 'stretch socks' I think (oops - just looked it up - actually a 'shrinker sock'), and proven in studies to be a lot more effective. So we're onto that now - and will find a way to import some for Tara.

Similarly with prosthetics...so much more advanced stuff out there that we need to hunt down for her that'll let her skate and cycle and paint her toes! I've seen better toes on a Bratz doll than on the prosthesis we saw at pre-hab last week. (Just realised - Bratz dolls are probably preparing a whole generation of kids to be totally comfortable with yanking a prosthetic lower leg on and off, since that's how they work!).

Having fun in the meantime. Pic of SuperDad (he really is) taking Tara thro' the water tubes at the Sea World Resort this last weekend. (Thanks King K - and happy birthday!) We were more scared that Tone would get stuck in the tubes than worried Tara would hurt her leg!

Tara's Form Captain Award

2008-02-08T15:00:00.002+10:00

Today all parents were invited to St Hilda's to congratulate all the girls who've been chosen to be leaders. The school wanted to honour the girls by presenting them with badges at chappel with parents present.

It was great to hear Tara's name called out and to watch her receive her badge. Biggest grin and so proud of herself as we were. She was a little lady on her crutches today - I wasn't sure if she was going to race on them as she usually does - we tend to close our eyes as she comes flying past us - she just does not know how to hold back.

We witnessed some amazing leaders and hope this inspires all our girls to become leaders too. Jadie and Cassie have you been inspired?

Dadda