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Original poster

Living with the knowledge that my child's life will be short.

101 replies

Vio · 26/07/2007 00:52

I am mom of a perfect boy , my first and only child, who is now 12 weeks old. Diagnosed with a life limiting genetic disorder and unlikely to live to celebrate his 1st birthday...finding it very hard to cope ..

OP posts:
dizzy34 · 29/07/2007 18:06

Hiya,

We found out when our son was about three months old that his condition was terminal. He is four now but each month brings new complications for us. He is in hospital again now for the third time in july on oxygen.
We too go to a childrens hospice and your right it is like being in a club that you never want membership of.

My love and thoughts go out to you...

Denisexx

Original poster
Vio · 30/07/2007 02:46

Hi Denise, do you worry that you wouldnt be able to cope when hes gone?

OP posts:
saggarmakersbottomknocker · 30/07/2007 15:24

Vio - so sorry to hear about your little boy. That must be unbelievably hard

I spent my dd's first year believing that she wouldn't survive; like slownorris's dd she has a significant cardiac condition. It was what they said would probably happen (it didn't) but it was never written in stone so to speak so there was always a tiny glimmer of hope. I'm not sure how you stay sane when that hope isn't there.

((hug))

bullet123 · 30/07/2007 17:29

I am extremely grateful I cannot comprehend what you must be going through. I am thinking of you though.

Original poster
Vio · 31/07/2007 00:44

i dont know why...each time when i receive emails from friends telling me not to give up as you are still young and you will have well baby in the future....i would get a bit angry...

you know..its not like that...its not like you lost your watch and you are lucky money to have enough money to buy a new one..i am not losing a baby..i am losing my boy.... i dont think they can understand the difference..its not like that... i cannot say it or explain it... i am losing a boy who i love to bits..who i conceived with love..i am lucky enough to get to know him and see him but unlucky to have to watch him suffers and will have to watch him go...

i dont know if i should tell them to stop telling me that... i just want ppl to know.. you dont know wnat it is like to lose your child..you really cannot...its a lot of pain and it will never heal..i think time will probably make me feeel less painful but the pain will stay and will always be there..

OP posts:
Leati · 31/07/2007 00:59

Vio,

They probably mean well but you are right to think it is insensitive. Sometimes people are just so desperate to offer comfort that they say stupid things.

Original poster
Vio · 31/07/2007 04:12

ihv no doubt that they mean well..just that it doesnt sound right ....

OP posts:
thomcat · 31/07/2007 12:02

Hi Vio, well welcome and i'm glad you found this site, I hope it will be a source of comfort to you, in some small way.

My DD has Down's syndrome so I am unable to really help with advice and compare feelings in that way. There are others who can do that, unfortunatley

With regard to people saying the wrong thing, I don't hink there is a mother out theer whose child has SN's that hasn't felt that at some stage. In the panic to try and say something, anything, to try and make you feel better the wrong thing is often said. I think you need to be honest and tell these people that you know they mean well but talking of replacing you darling boy with another isn't helpful and you can't think like that, don't want and can't. You may well have other children but you can't think of that, you are living or the present and the time you have with your son and are worried about how you'll cope when it's his time to leave. Just point this out to them and then step away for a moment. They are struggling with this in their own way and want to help but don't know how so perhaps if you have the time and energy give them a littel guidance as to waht you neeed from them right now and in the year to come.

Thinking of you.

mum24boyz · 31/07/2007 16:28

i'm sorry, i have just read this thread and have tears in my eyes and a lump in my throat, it was bad enough nursing my mum knowing she was going to go, i cannot even comprehend what you must be going through hun, i am so sorry, i wish i could offer you words of comfort, but you know they are just that, words, my thoughts and love and healing prayers are all coming your way, i wish you the happiest yr of your life, as someone else has said, go for it and make those memories really something to smile about. sending you big hugs. (((((()))))xx

dizzy34 · 01/08/2007 11:17

Vio,

Sorry for the delay in replying, my son has been in hospital for a few days. He was rushed in last sat unable to breathe and has been on 10litres of oxygen until tues. He is off oxygen now, except for a small trickle.

I do worry how we will cope when he is gone. He was the 13th in the world to have this condition so it is very rare. Two of the little boys with it have died, one in feb and one last december. Have a look at www.harrysjourney.co.uk

if you want to chat more my email is [email protected]

Denise

Pinkchampagne · 01/08/2007 11:24

So sorry, Vio. My thoughts are with you.

edam · 01/08/2007 11:29

Vio, I'm so sorry. Not sure if this is any use at all, but I heard Nicola Horlick on the radio the other day. Her first dd died of leukaemia. She said she thinks every life is a full life, however short - that her dd lived a complete life, if that makes any sense. And her dd lives on in the memories of her familiy and friends.

It's not the same as your situation, but your post made me think of it.

Woooozle100 · 01/08/2007 15:37

vio and dizzy - don't have a great deal to add to but just wanted to reply to your posts. I'm not in yr situation - though we where given scenario that dd may not survive her first year due to probs from rare chromo disorder. Your situation is truly heartbreaking - but I hope you can try and focus on the good days and times you have together - cherish them. At least you know how precious they are. And when it all gets too much cry / scream / vent. Sending you lots of love x

geordiemacminx · 11/09/2007 14:29

I'm absolutely gutted to have to tell you all the Vio's son James passed away this morning at 9.10.

wheresthehamster · 11/09/2007 14:41

That is so sad

Geordie, please put this in miscarriage/bereavements as more people will see it

Marina · 11/09/2007 14:43

I'm so sorry to hear this Geordie

bundle · 11/09/2007 14:44

oh i'm so sorry about this

marthamoo · 11/09/2007 14:46

I've only just seen this thread. I am so, so sorry.

hoxtonchick · 11/09/2007 14:48

so sorry .

LadyTophamHatt · 11/09/2007 14:50

SadSad

IdrisTheDragon · 11/09/2007 14:50

I am so sorry .

Blu · 11/09/2007 14:51

Oh, how very very sad.

I remember the earliest posts when he was born- poor Vio, poor James.

Geordie, please tell her that people are thinking about her, and have thought about her precious darling boy.

onlyjoking9329 · 11/09/2007 14:51

Very sad news

Tamum · 11/09/2007 14:54

Oh Vio, I am so so sorry. I remember when your little boy was born, but missed this thread because I was on holiday.
Sending you much love xxx

Dinosaur · 11/09/2007 15:52

How terribly, chokingly sad. I am so sorry.

Much love to you.