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...