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Showing posts from December, 2003
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The enormity of Rose's situation again hits me, after the elation of having her home over Christmas. Tears flow, Rose's hand tenderly reaches up, and she gently strokes my face.

That she is here is all that matters for the moment.

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Christmas lunch with Rose's maternal extended family
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Rosie's feed pole and a whirl of colour surround her in the lounge room on Christmas morning
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Rosie has been given overnight leave for Christmas. She's in the car for the first time in twenty-two days.

Home on Christmas Eve

It's a bittersweet thing to be bringing Rose home, but for such a short time. We've all been upset about the recent medical opinions on her survival odds.

But then we look at her sweet, happy little face, and just enjoy her.
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EXCERPT FROM EMAIL TO FRIEND

This is an old friend, a former colleague, who I lost touch with in the early 1990s when I went on maternity leave to have baby Lewis.

Tonight I found her again accidentally, when I saw her name mentioned on a website I visited. I’m bringing her up to date.


“We had Lewis, then 5 years later, Hannah, and 5 years later again, our baby Rose. What I do these days is care for Rose, who has a rare liver disease called biliary atresia. Destroyed bile ducts, which sounds simple but is actually lethal, and she is in liver failure. Rose at the age of less than 8 months needs a liver transplant!

She's a gorgeous girl, and we're savouring every moment with her. She's in the Royal Children's Hospital much of the time, as she is tonight. Shane and I take it in turns to stay beside Rose, while the other sleeps at home with Lewis and Hannah.

Rose hadn't been growing for a few months, until about two weeks ago. Her liver specialist wants to keep "growi…

school year coming to a close for Lewis and Hannah

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What support the kids have had from school over this difficult year. Lewis always performs piano pieces in the end of year concert for Out of School Hours Music Program. It's a shame Rose can't make it to the show. Shane's also missing out - with Rose overnight on the ward.


EXCERPT FROM EMAIL TO FRIEND WHO IS MOVING PERMANENTLY FROM MELBOURNE

This is an old friend who I probably won’t get to see before she moves away forever. This is part of a farewell email I wrote, in response to her excited news about the land she has bought up north in Australia.

"We're still in hospital with our darling. I'm so in love with Rose, and I think that what I love about reading of your . . . joy is that with Rose's illness I also feel I'm having a great adventure, and that I'm excited about what's in store for her (desperate as her situation seems on some days. But even those desperate days seem packed with life and the most burning, passionate love possible).

I'm blessed to have her - I feel alive alive alive. She is the most astonishing little person I've ever met."

EXCERPT FROM EMAIL TO FRIENDS IN MY BOOK CLUB

Explaining why I won’t be coming to book club this week

“Rose having another procedure this Thursday (attempt to drain a devilish "pseudocyst" on her pancreas), and it'll be my turn to sleep beside her in hospital that night.”
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EXCERPT FROM EMAIL TO FRIEND

“Rose IS back in hospital! Has been since the night of the big storms - pancreatitis again, and other stuff. No idea when she'll get out again - she's having another surgical procedure done this Thursday under general anaesthetic.

Have just walked in the door with the big kids, to spend the night in my own bed - I've been in cuddling Rose since yesterday morning in hospital. Shane’s on duty in there tonight.

To tell the truth I don't have a hope of doing any pre-Xmas catching up this year, what with it being only a couple of weeks away. But never mind - we have our eye on the goal, which is to get rose through transplant, and life should get back to normal once we've got her there.

I’d say come in and visit us in hospital, but Rose is actually in an isolation room this time, and they limit visitors to family only, to try to restrict her access to germs. Every time she's been in a shared room she's caught something in that hospital! …
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Rose, readmitted to hospital on 2 December. This feels like it's going to be a long stay - perhaps until transplant?
She's beautiful!