Welcome Home Stumpie

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

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)

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

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!

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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!

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!