this biliary atresia experience

EXCERPT FROM MASS EMAIL TO FRIENDS “Rose's sweat test for cystic fibrosis today was NEGATIVE! That's a big load off our minds - now to the ongoing task of fattening her up. The surgeon doesn't want to transplant her till she's at least 6 kilograms, preferably 7, even better if she's 8. She's about 5.4 now, so she has a way to go, but last night took a 10 gram step towards her goal! She needs to do that every day.”

EXCERPT FROM EMAIL TO FRIEND “rose makes life so simple, when all we need to do is to hold her, and smile at her, and . . . what? . . . drink her in! i feel like i'm really living, each day that she's here, and f*** everything else. i want to be able to look back, if she can't make it through these stupid hurdles, and think, hmm, she really knew in every moment that she was loved. i think she will make it, by the way. what makes it hard is little hannah - yes, still little herself, just a preppie, but boy has she had to grow up this year - bursting into tears tonight and saying she wishes that little rose was healthy. hannah wishes that i picked her up from school - not always other people. that kind of stuff. i can't remember when i last heard her read a school reader! and lewis being so grown up and understanding - putting himself last! that makes it hard! that does it - i'll bring them to hospital with me tomorrow - bugger school for the moment!”

EXCERPT FROM MASS EMAIL TO FRIENDS “i am in such a rush that i won't even bother with capitals! many of you already know that we've had rose back in the royal children's hospital for the past 2 and a half weeks, and there's no news on when she might be coming home. this time, things have been more serious than ever, medically speaking, and rose may end up being activated on the waiting list for liver transplant as early as this week. there's lots of stuff clouding the waters though, not least of which is the fact that we're waiting to find out whether or not she also has cystic fibrosis !!!! (i know! can you believe it? we're having trouble getting our heads around that notion too!) she has pneumonia too, but apparently that's the least of her worries. anyhow, i've cried my eyes out, but have pulled myself back together again over the past few days. when i'm with rose she seems as spirited as ever, and i know she'll give it her best shot. she