Wednesday, March 19, 2008

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). 

2 comments:

Lisa Ricourt said...

Dearest Jen, Tone, Cas, Jadie and of course courageous Tara,

It is hard enough for me, being on the other side of the world, sitting here in my office with tears running down my face whilst reading....I can imagine how difficult it is for you all. You are such an amazing brave little girl Tara.

I'm so pleased to hear that Louise, Jean Luc and Julia are there strongly by your sides also.

We wish you all the very best Tara.

Please send me your telephone numbers Jen, along with those of Louise also.

All our love to you all,
Lisa Christophe and Jade xxxxx

Anonymous said...

Following your doings every day. And you know I'm a firm believer in found pennies. x Ted