I am feeling so many different emotions today. Today is the day the 'normal life' resumes again! Kids go back to school, grown ups go back to work and I am left at home with my thoughts.
I am miserable but so angry.
Angry that this disease took our babies life.
Angry that she spent half her life in Hospital.
Angry at the people that said NO to life saving organ donation.
Angry at the system for Classification for Transplants.
Angry that she missed out on livers, by no other fault than the wrong blood type.
Angry that Rani became sick enough to be a CAT 1 but was then to sick to be transplanted.
Angry that more people don't donate.
Angry that she was in so much pain.
Angry that she was stuck in a cot and never leaving her room unless she was in ICU.
Angry that she spent her last 5 months confined in that room.
Angry that she never got to speak, crawl, walk, LIVE!
Angry that she is gone.
Angry that we did everything the Hospital asked and still we didn't get to take our baby girl home.
ANGRY that she never got that life saving liver.
We don't blame the Doctors, Staff or the Hospital. They can't transplant what they don't have. We are just very frustrated and disappointed. We feel very naive that we thought a simple liver was the answer and we would be home with a happy healthy baby. That having Rani in the Hospital was the best place for her and that she had a better chance of getting a liver being a in-patient rather than at home.
We will have 'what if' questions for the rest of our lives.
BUT i do believe that ALL AUSTRALIANS well everyone needs to be educated on the importance of Organ Donation but even more importantly you need to discuss your choice with your family, friends, loved ones as at the end of the day they are the ones that have to make the heart breaking decision.
PLEASE DON'T LET ANOTHER FAMILY GO THROUGH WHAT WE HAVE. Discuss Organ Donation.
www.organdonation.org.au
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26 comments:
{{hugs}} mel
be angry u have every right to be angry
your family this week has prompted me to discuss with mine my desire to be an organ donor to help another would be the most amazing gift...i only wish rani had recieved one
Dear Mel
I have just read your blog after your post about the Fundraising day I am organising for Dylan.
I could not imagine how hard it must be for you and your family. My thoughts are with you all.
It is so unfair that children have to suffer in such extreme ways, you have every right to be angry.
Rani has made a cradle in your heart, and she will live on in your heart forever.
My deepest sympathies to you and your family.
Jody White
After hearing the news of Rani and feeling immediate saddness, I then felt a very deep anger. None of it was fair. I'm glad you're voicing your anger Mel and highlighting that fact that we all need to be donors!
my deepest sympathies are with you also Mel..
you have every right to yell & scream and be angry...
we also have talked about being donors, since knowing little Rani..
i wish you strength & courage Mel and your family..xx
This has always been a subject that I have felt strongly about Mel, and even more so now after witnessing Rani's fight for life. My family know that I wish to be an organ donar.
It breaks my heart that you are angry, but of course you are very right to be. It's just not fair. (((Hugs))) to you and your family
Michelle B
angry?? after all you have been through hun, you have a right to be f&*(*&** Furious!!!..Let it all out, yell, scream, do it all, i know i would be..
It's not enough to put it in your will about donorship, usually the will is read later..do as Mel says..tell everyone one..tell your doctor, get it in your medical records (I have!!) I also have it in my children's medical records so they know if i'm not around to tell them..i also have spoken to the hospital and hopefully, next time we are in hospital they will put it in our records there too!!..the more people you tell, the more people will know...
Mel, I wrote to ABC radio (Melbourne) on the day of Rani's funeral, and today have sent letters to the editor in both The Age and the Herald Sun, about the terrible shortage of organs that caused Rani to miss out.
If you want to see the letters I wrote, let me know, since there's every chance they won't be published.
You're very generous to be using your anger to publicize the problem, for the future benefit of others. I'm furious, and can only imagine how much more furious you must be. I'm so very sorry that this has happened to your beautiful little girl.
Warmest regards,
Lynne
Since going through this with my dad we've spent the past 12 years talking about the importance of organ donation to anyone that would listen, if only people really could understand what incredibly PRECIOUS gifts they could give, if they could see my children with their grandpa, they wouldn't hesitate.
Sweetie you have every right to feel the way you do, I feel angry and sad about your darling girl every single day.
Much love hon, ring if you need to talk, I'm always here for you.
Hugs Chrissy xx
For her short life, your little girl has make a *lot* of people forcing them to think about organ donation. That is a tremendous legacy to leave. But you it shouldn't have had to happen and that thought makes me angry too.
Oh Mel.. the anger you feel is so normal.. I have always been an organ donar.. questioned it a few times, but have never changed my mind.
I pray that you feel some comfort knowing that Little Rani is at peace and out of her pain.
Bug hugs to you all
*C*
Hey Mel
Like everyone above, you have every right to be Angry and let it out thats good frustration release.
Organ donation was always a thing in my family before Princess Rani, and this highlighted the importance to me of course.
My Darling Daughter Sarah as soon as she was 18 has become an organ donor and she felt very strongly on it.
Both my DH and I are too. Craig is a little bit young for now but will make his decision when old enough I am sure.
Take care
Love and Hugs....xxxxParky xxxxx
Mel,
Screaming at us and anyone who reads here will help immensely, I hope, s scream, yell, rant and rave all you want to.
Organ donation is something I have been touchy about...I have an Auto Immune disease so my organs will be useless BUT my DH, Oldest daughter and oldest son all have ticked off thier licenses for organ donation. I am yet to discuss it fully with my other two kids (15 and 13).
I had a dear friend who had a heart transplant when her 2nd baby was only 8 weeks old. No cardiac problems were noticed until L. was just home from hospital with A. The transplant gave L. an extra 3 years to love her two daughters and to see A. at least make her third birthday.
Take care.............
Jenny.
XXOO
Like everyone else here I don't blame you for being angry!! I have always stated my wish to be an organ donor to my dh. I mean it's not like you need then once you are gone!! There was a case in Italy about 10 years ago when an American family on holidays had a car accident and one of their sons died. They donated his organs and more than 10 people benefitted. The subsequent story and media hype surrounding this increased the number of organ donors significantly in Italy. Italians couldn't believe how generous this American family were being when Italians rarely donated their own organs.
So, shout it out loud and to as many people as you can. I have never met you but can tell you are a person of immense courage and compassion. Look after yourself and your family. My thoughts are with you.
you have every right to be angry Mel, you were robbed....but thankfully Rani's plight wasn't in vain, and through your Blog you have made so many people aware of the importance f organ donation...hugs
Mel, I feel so sad that the transplant for Rani never happened. I've been following Rani's progress for months, never even realising before that time that such a cruel disease existed. Through your blog and Aussie I feel I've gotten to know you even though we have never met. You are a strong caring woman who has already done a lot for raising the awareness about organ transplants. Through the whole ordeal you have shown such tremendous courage documenting your princesses life. I hope that as you go through the grieving process, you will keep on fighting for this worthy cause and though it is too late for your gorgeous girl, you can help others. Even if only one person gets saved thanks to you, not all has been invane.
Mel, you are an inspiration to us all!
Heike
Mel,
I really have no words that will ease your pain, but as everyone has said, you've got every right to be angry. Angry that the transplant never happened. Angry that Rani died from it. Angry at people who don't donate... just let it all out.
Since your Blog was all set up, I've been talking daily to the boys about transplant. Even thou they are not old enough, they will relize what donor donation is all about. I've even putted the oldest one on the website, and he's in awe of what it is all about.
So, hopefully with you, others will be more aware of what organ donation is all about. Before this, I never knew a disease like this exist, because I had never heard of it.
Hang in there Mel, and also hugs to you, john & your family.
Jenelle
And you have EVERY RIGHT to be angry. It's just NOT fair what Rani or your family has had to go through. You vent, scream and holler darl, and keep doing it until more people get the message.
{hugs}
K xx
mel....you be as angry and frustrated and scream all you want. i know i would in your place.
we have discussed organ donation as a family - DH, me, DS1 (aged 18), DS2 (aged 15) and DD (aged 10) and we all agree....why take it with you when it can still do some good here...???
we all know what each other wants in terms of organ donation, funeral arrangements, the lot.
a difficult discussion to have but one we felt was necessary.
our neighbour died tragically 2 years ago and 9 people were given a second chance at life because of his family's precious gift.
we miss our mate rob everyday but his senseless death was made all the more easier by the gift of life he could give to others.
god bless you mel, god bless your family and god bless your precious angel.
xo
oh mel, i wish i was there to give you a hug and for you to scream, yell whatever you wish.
All my boys have agreed to being donors, have done for a long time.
thinking of you and john
julie
xoxoxoxoxo
O Mel....yell and scream and pound the walls if you want. We are all here for you to vent to. You have every right in the world to feel the way you do.
We have all been on the organ donor list for quite sometime now, and my desires are well known to everyone that i know. If theres anything in me that will benefit someones elses life after I'm gone then they are more than welcome to it. No good to me when I'm no longer earth bound.
Please take care and remember to yeall and scream as much as you want.
Take care Mel,
Leonie
Oh hon, you have every right to be angry - I'd be down right pissed off!!!! to say the least.
Everyone I know has agreed to donate their organs, I am unfortunately the exception - my blood is very faulty but that's a whole other story.
You know the number if you need someone to scream at sweetie.
{big hugs} and love to all,
:o) Lisa xx
Mel I can't imagine why you wouldn't be angry right now, I think it would be very normal to feel that way after what you all have been through.
The awareness you have created through your blog over these past few months will make a huge difference to the way people think about organ donation, it's evident already.
I know my boys are aware of it now, even though they're too young to truly understand, but it's something we would never have discussed before.
So thank you.
Thank you for your courage, for caring and sharing, and for your concern for others. You have already changed my world!
Mel, I wasn't an organ donor until about 3 years ago. I don't know why I wasn't. One day I was in the RTA and the man over the counter asked me if I would like to become one. So now I am. Rani's story; your families story is another reason why I'm glad I changed to become one. May this needless kind of tragedy never happen to another family.
(hugs)
Lus x
Oh Mel my heart goes out to you and hope more people get the message.
Big hugs
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