Mail on Sunday Magazine

[lottiejenkins]

I found this article today..........I thought it was very moving,,,, what a decision that lady made... dont think i could do it though!
www.mailonsunday.co.uk/pages/you/article.html?in_article_id=522925&in_page_id=1908

minority wrote :How many of you have been told that your child would be a 'vegetable' (if they survived)in those first few days/weeks? How many would have held back their love just in case they died? How many have allowed themselves to love a child that had a shortened life expectancy? I have been there, I held back, I had to. My daughter wasn't a screamer or a fitter but I don't think I fell in love til she was a year old, when the dust had settled and I got to know her.

Me. DD screamed for 2 years. And started fitting at 3 months and was dx with infantile spasms. We were told at birth she would be a 'vegetable' if she survived.
So I have been there.
I'm so saint but it wouldn't cross my mind not to keep a child just because she was brain damaged. No help either as friends vanished and family (in-laws only value academic acheivement as what makes someone worthwhile) rejected her.
But when you choose to get pregnant you have responsibility for that child. No child teurns out as we imagine.

There is another article - in the telegraph today. www.telegraph.co.uk/health/main.jhtml?xml=/health/2008/03/10/hjulia110.xml&page=2

Truly, I work in book publishing and the amount of coverage this book has had is phenomenal.

But I'm sick of it now. I give up trying to persuade those that just don't see it why this is all so wrong. I've lost hours of sleep over it, and its not worth that.

One thing though, I've noticed that I have been holding dd1 particularly tightly over the past few days.

Sorry, I've linked to page 2

"Detaching myself from her was so hard," she says. It became easier when she got to know Tania, Imogen's foster carer. "For Tania caring is a vocation; she doesn't mourn the child Imogen could have been, as I did. It's so much better that Imogen is with her than in a home where the carers wouldn't cuddle her and couldn't give her emergency medication"
just read that in the telegraph.
this woman is a idiot.
does she not realise parents and carers are trained to give emergency medication.
I know this as I was. how about you NMC?

'"We can do it together, it would be so simple," she whispered to Jay one night when Imogen was sleeping.

This time it was he who pulled them back from the brink. "We can't take that risk. Think of Elinor." The prospect of having their two?year-old child taken from them stopped them in their tracks.'

Dear god it gets worse. She seems to have latched onto this survey from Mencap that 8 out of 10 families are at breaking point. She doesn't seem to understand what this means. It doesn't mean that 8 out of 10 families are harbouring thoughts of killing their children or of dumping them at the first opportunity. it means 8 our of 10 of us are exhausted and tired and need the extra help that Mecap was campaigning for.

" I've written a book in order to give other parents comfort,"

which parents? Those of us who stuck around don't seem to identify with this book and I think it's an incredibly dangerous book to give to someone in the early post diagnosis days- because- that feeling of wanting to run is so common, but if people don't do it then they find rewards. They need to be told that- they need to to be told that you don't have to be a martyr to bring up a disabled child nor do you need to be someone special. They also need to be told that those dark days pass and your child will bring you great happiness.

Far more useful that the deluded version of reality JH has chosen to justify her actions. OK that was her reality. Don't try and apply it to the rest of us.

Take this line:

"It was hard to bond, especially as doctors hinted at the possibility of brain damage."

Now if it had said 'It was hard to bond, especially as doctors hinted she might die'. Yep got it, understood. But once again it's brain damage=unloveable.

"Maternity hospitals are so worried about mortality statistics that even the sickest children are saved. The right to life is paramount. No doctor would dare end a child's life, not after the case of Charlotte Wyatt," she says, citing the child whose parents won the right for her to be revived, despite severe heart and lung troubles. "More children like Imogen are being born, but we don't have the infrastructure to support the families."

This is beginning to read like a manual of eugenics. Shouldn't the right to life be paramount?

"Either she looked after Imogen herself, full time, or she put her into care"

This is not true.

has anyone else had fleeting thoughts of what she would do if Beardy had a car crash resulting in severe brain damage?

hopefully he will be perfectly ok with his wife taking advantage of that "small window of oppertunity" to murder him.

"The prospect of having their two?year-old child taken
from them stopped them in their tracks.". So the thought of having their other child taken from them stopped them from murdering Immy, yet they were happy to just abandon her at the earliest opportunity. .

And from what I've read of Charlotte Wyatt's parents' "inabiliy to cope", as I understand it, all of the Wyatt children have been taken into care, so for them this is clearly about more than just their ability to cope with a disabled child.

I do like this listing.

Apparently I don't even have to say anything and I can be condemned for saying it.

Or can someone point out to me where I said people on here are stupid???

Or don't you want the truth to obstruct your discourse??

I am glad though that someone says they feel "safe to say that I am either a friend of JH a SW from the elderly team or someone who knows nothing about children with SN".

I hope you feel safe to have got me completely wrong, because otherwise the truth might distress you.

But at least someone got a laugh out of it, which is fine by me as I have broad shoulders and can even take such horrid insults as being called a SW.

If it's a consolation, you are right in one bit, I do like a scrap but only when it';s about getting the needs of a young person met.

That is one thing I will fight for.

can even take such horrid insults as being called a SW.

Shall i point out to TI what my career was prior to becoming a full time carer?

"All of you on here seem to have arrived at a situation that delivers for your children which makes in the right situation for you.

Julia has done likewise, her solution may well have been different to yours and indeed mine."

Except Julia didn't did she? The dreaded social workers arrived at the working situation.

Anyway Julia's story is Julia's story. I'm glad it's not mine, but whatever. I do wish she wouldn't pretend to talk for those of us with severely disabled children though because she doesn't.

My main objection is with the idea - from society- that it's brave and acceptable to leave your child just because they happen to be disabled.

But I/we seem to have said that many times

I think this rather ridiculous post:
"Others struggled and the services, as they will do failed to deliver.

But she made them work.

Are you all not perhaps a bit jealous."

Does suggest a little bit of stupidity on our parts. Continuing to look after our children when we could be dumping them on other then escaping back to our merry little lives.

oh Fio you're right.

I would like to hazzard a guess that Talies is in the medical profession. given his/her quotes talking about having been there with parents at 70 who are no longer able to cope and having said that he/she has met Immie.

And given the experiences that some of you have had with the medical profession this would fit surely?

but he/she can't confirm this because this is a public forum and although people may say these things behind closed doors to distraught parents it would never do for a pediatrician/doctor of any kind to be seen to be making such statements in public.