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.

New leg soon!

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

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...

Hey, hey it's Friday

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

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

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...

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

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...

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

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...