Tuesday, April 18, 2006

Vent, Vent, Vent....

After watching Rani throw up for the second time tonight, I am so mad, upset, frustrated and every other emotion that I am just going to vent all the things that I hate about Biliary Atreaia in no particular order...lol

I hate that I have to give my Baby Girl meds 3 times a day that make her throw up or come out the other end.

I hate that I have to force feed milk into her through her Naso-gasric tube.

I hate that I have a 8 month old that is about 3 months behind everyone else physically thankfully not mentally.

I hate that every week I have to take her to Hospital to have blood tests.

I hate that there is nothing I can do to make her better.

I hate that she can't tell me what is wrong.

I hate that at any time we can get a call to take her to Hospital.

I hate that her belly is bloated again and she will probably be back in Hospital again real soon.

I hate that she is sick.

I hate that this affects my other 2 children and they miss out.

I hate that we can't plan long term just in case we are in Hospital

I hate that Rani is so itchy that she scratches herself until she bleeds

I hate the fact that all of our family have conversations about the colour of poo!

I hate that her operation failed

I hate being told that 'I got Rani because I could handle her', or 'God only gives kids like this to those that can handle it'.... let me tell you I can't handle it

I hate being told that there was obviously a reason that I couldn't get pregnant for 5 years and have a 7 year age gap between my second and third.

I hate that Rani is yellow.

I hate the fact that I cry myself to sleep

I hate that she has to have a Liver Transplant

I hate reveiving and wondering if I did something wrong during my pregnancy, even though I have been told I didn't cause it.

I hate worrying daily that Rani has to become really sick before they will do the transplant.

I hate the looks and people that think it is ok to ask if John is the Father because she is dark...just rude

I hate the Health Sister that told me that Rani was fine only slightly Jaundice and that the Peditrician was wrong and that I should get a second opinion..I am so glad I didn't listen to YOU!!!!

I could go on and on so I think it is time for some positives

OK

I love the time I get to spend with Rani

I love that the Peditrician didn't give up until he found out what was wrong with Rani unlike the Health Sister ...grrr

I love the nurses at RCH, although wish we weren't on a first name basis...lol

I love that my family are there ready to do anything at any time for us.

I love that friends of my family have offered to get tested to donate part of their liver and they have never met Rani.

I love that I have so many cyber friends that I can just send an email or SMS to and feel better

I love the support I get from all of my friends

I love everytime time I hear Rani laugh

I love having my whole family home

I love thinking of how life will be when Rani is healthy

As much as I wouldn't wish this on anyone (not even my worst enemy) I am glad that it happened on our 3rd and final child. I don't think I would have been able to handle this 9 years ago and I definately wouldn't have had anymore children...plus the advances in Medicine have probably been huge in 9 years. She gets fantastic care at RCh and her Specialist is great...I just look forward to the day that I don't have to go to the Hospital and I don't have to put Rani through anymore blood tests, operations and Hospital stays.

OK if you have read all of this thanks I feel much better getting it off my chest.

I wouldn't trade Rani in for the world.

17 comments:

DenimAngel said...

The hugest (((hugs))) for you Mel. I have no words.
Susan

lisa :) said...

I hate that there's bothing I can say or do that will make you feel any better babe :( I do hope though that getting this 'out' has made you feel a bit better, just a tad even?

Love Lisa xx

The Salisbury Family said...

Big Big Hugs Mel, vent away, we will always listen and cyber hug you

xxx
Joyce

Chris Millar said...

I agree with Lisa - I wish there was something I could do. Thinking of you all.

Sal :-) said...

Big Big Hugs Mel, I will keep you in my prayers that you get Rani healthier sooner rather than later and you have the strenght to carry on this journey.

jody :) said...

"I hate being told that 'I got Rani because I could handle her', or 'God only gives kids like this to those that can handle it'.... let me tell you I can't handle it

I hate being told that there was obviously a reason that I couldn't get pregnant for 5 years and have a 7 year age gap between my second and third."

OMG, people actually say this to you? That's downright insensitive. :( Big hugs to you hon. xx

jacquij said...

big hugs
i cried while i read this sharon is still on aussie and keeps me updated on rani...i to wish there was something i could do for u

Penny said...

I'm so sorry, Mel. You are such a strong person coping with this and I am so glad you have such great family and friend support.

Peta..xx said...

OH Mel, im so sorry for what you are going through, no one should have to go through this..
I know there is nothing i can say to make it any easier for you, but vent away to your hearts content..

Lisa has just told us that you have had to go back to the hospital...
I just want you to know that you are all in our thoughts and we are praying for little Rani and that everything goes well..
Stay safe, strong & know that you have many many (cyber) friends that are always here for you..
take care...

Debbie Y said...

Mel I don't know if anything I say will make a difference but I wish there was something I could do to help ... the boys and I are sending cyber hugs and prayers your way. I hope your precious princess is feeling better soon.

Deb
XXX

Christine M said...

Oh Mel ... I truly don't know what to say to you that can even remotely convey how much I feel for you at the moment. I know it's nowhere near the same but I went through all those horrible feeling of blaming myself and second guessing everything I did with him when David was ill as well. I know how traumatic and stressful that time was for me and our family and it was only for a few weeks - I just can't imagine how you are dealing with this for so long.

I do hope your vent has let off a bit of steam and that this trip to the hospital will be the one where they say enough is enough and do the transplant.

We are all thinking of you and your family and hope you all have some good news soon.

Anonymous said...

Mel I too am lost for words that can make you and your family feel better but Princess Rani is in my thoughts and I will be sending heaps of positive vibes your way.
Cheers
Anna
xxx

Michelle M said...

Mel, all I can say is vent away... Find a quiet space and scream your lungs out...

You are all in my thoughts and prayers always!!!!!

connie said...

My heart and prayers go out to you,your family and more importantly to beautiful Rani...Mel i dont know what to say to you..but know that we are always here for you whenever you have the need to vent, cry or laugh...stay strong mate...u have so much support behind you..i know we dont know each other to well but if u ever need anything im not too far from you just let me know..ive just heard Rani has gone back into hospital...im praying so hard for Rani and sending all my love your way...Keep safe...stay strong..
all my love
connie..xxx

Angelrat said...

Mega cyber hugs to you Mel, and to Rani. I cant begin to imagine how hard this all is, like all the other girls, I wish I could help, but all I can do is pray that it all comes out well in the end.

Linda
xx

Kirsten De Forest said...

I'm so sorry that I didn't get the chance to see you on the weekend, and give you a big hug. But you know that I am only a phone call away, and that I am thinking about you and your family ALL THE TIME.
Kisses and hugs to you all.
Kirst xx

Bev said...

I hate that this is all happening to you and your wonderful family...but I love the fact that you can still see spme positives
((hugs))