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!)