Sunday, June 29, 2008

Go Godparents, Go Go Go

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!
















Sunday, June 22, 2008

Carnivals and a Governess

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!

Monday, June 16, 2008

A little pressie

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.

Thursday, June 12, 2008

Barbie socks & happy hands

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!

Tuesday, June 10, 2008

Lou Lou has Landed!

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.


Thursday, June 5, 2008

New leg soon!

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

Tuesday, June 3, 2008

Movie Stars & Rebel Yells

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...