I have found that I have handled this week a lot better than I thought, perhaps it was because John was away for the last 5 days, so I had to be both Mum and Dad to the kiddies which kept me busy. Plus scrapping inspiration hit, which was also a great excuse to stay up to the wee hours of the morning and literally fall into bed with no dreams, thoughts flooding my brain.
Of course I can't turn off everything, there are down times but it has been great to chat to friends throughout the week - usually I turn into a hermit crab and nobody hears from me or sees me.
One of the silly things that keeps playing over and over is that last week in ICU - I remember and feeling guilty firstly because we got excited that Rani would finally be Cat1 for a liver (so basically next in line) the catch being she was to sick to get a liver - but don't get me started on the stupid rules and stipulations of getting an organ. I still get upset that people got calls at home to get a liver - we saw 4 transplants while we waited and one of them was a boys second!!! admittedly his wasn't compatible...but still we waited and waited but this level wasn't high enough or that blood reading wasn't the right amount and she stayed a Cat2, waiting for only a liver that was available in Victoria! I believe that if you are to sick to go home and your levels are rising on a daily basis you should get an organ from all of Australia instead of someone less needy that just happens to be in the right state. I also wonder how many people with self inflicted alcohol ruined livers got one over Rani and whether they continued to drink even after being given a second chance. I am sorry if that offends but it is my opinion and if you had to listen to the ridiculous rules you would probably feel the same.
Anyway as I said the guilt...I guess I got started...lol...I really thought it was just another trip to ICU - we had done it 3 or 4 times by this stage - had a big scare and in a couple of days she was back up at 5W. AS she was in ICU you are only allowed 2 people in at a time, so I let other family members spend more time with her...one thing I regret to this day. We should have had warning bells ringing in our ears those first couple of days as they allowed us to have 5-6 people in the room...but still living in hope that she would pull through and I guess the conflicting stuff we were being told...one Doc would be doom and gloom and the next would be more optimistic.
I remember the worst day was the Monday when all the Specialist had a meeting to see whether it was worthwhile fighting for Rani - worst day of our lives and of course the meeting wasn't until 6pm. But we were given more false hope - the transplant surgeon stated that is she came off certain drugs she could get a liver...I really don't think she was ever going to get a liver.
You know there are days that I think maybe, just maybe I could handle it better if she passed while getting a liver, or from complications because at least she got there...I feel robbed, not only from having Rani taken from us, but the fact that we never got the chance to see what the life saving liver could do for our little girl.
The thing that haunts me the most is that phone call almost 3 years to the day now - it was John telling me, my mum, dad and brother to get in to the Hospital as Rani was fading fast. I thought there was no way that my little girl would die without her Mummy saying good-bye so I wasn't going. I honestly don't remember a lot of that afternoon. It is in bits...I remember the phone call, then Dad doing up my seat belt, Mum helping me down the Hospital Halls to ICU and kissing my baby goodbye.
That is when my world collapsed...I had to get out of the Hospital the wall were caving in on me...I remember sending a SMS to friends and then we were in the bottle shop - drowning our sorrows.
This has made me a different person (nobody would be the same) and I have lost lots of friendships after this. People that I thought were good friends that just dissappeared. I understood that people didn't know what to say, so I gave them time but hey it happens and I realised that life is to short to be worrying about it. I know that the friends that have stuck by us are our true friends and we love them all and thank you for your support for the last 4 years...and of course our families...I know without my family and all the support, time in the Hospital, looking after Josh and Teagan and just generally being there and listening and I guess being able to talk it through with people that lived it has helped keep me sane...thank you just doesn't seem enough xxx