Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think parents of chronically ill and disabled children

65 replies

TestingTestingWonTooFree · 29/09/2018 19:27

...are super stars. We are on day 2 of baby DD being pretty unwell in hospital. Should be discharged tomorrow or Monday and the worst of it is over. How the hell parents of chronically unwell children cope, I don’t know. No choice I know. I am knackered after a week of it and I don’t have the big worries of care/future/money etc to be dealing with.

Hats off to you all.

OP posts:
MuddlingThroughLife · 29/09/2018 20:42

Thank you ewltsahooman and shucks.

XXaghast · 29/09/2018 20:43

You mean well op but whenever I hear this sentiment I think two things, firstly it isn't me who is ill so no poor me - poor kid and my kid is someone I love not a burden, secondly how fucking dare the public turn their back on us and allow the government and legal system to systematically eradicate what little help there was.

Anyone that wants to actively show empathy by helping should start there. I know the sentiment is meant well but it is exactly the sort of "saint" othering that leaves the disabled completely and utterly fucked over by society.

ThanksHunkyJesus · 29/09/2018 20:44

Muddling there are no words Flowers

sittingonacornflake · 29/09/2018 20:48

Oh @MuddlingThroughLife I just don't know what to say. But thank you for sharing. And I'm so sorry for what you've been through. Thanks

MuddlingThroughLife · 29/09/2018 20:54

Thank you hunky and cornflake x

AvoidingDM · 29/09/2018 20:59

Mudding Flowers
I'm so sorry..

jarhead123 · 29/09/2018 21:04

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

BelladonnaKebab · 29/09/2018 21:04

Oh @MuddlingThroughLife I'm so sorry. Flowers

PurpleDaisies · 29/09/2018 21:07

I can't believe some have found this post patronising!! Some people just love finding an issue.

Those are parents of children with chronic illnesses and disabilities. Who are you to tell them that their feelings are wrong? Hmm

Zoflorabore · 29/09/2018 21:14

Muddling- wow, just wow. That post has taken my breath away.
My ds has AS and lives a full and "normal " life ( hate that word but I can't think of another ) and he drives me mad sometimes.

I then read your heartbreaking post and feel like I have no bloody right to complain. My ds isn't ill. He has a condition and will hopefully live a long life.
How do you continue after that? I suppose there is no choice, especially if you have other dc.

Your post touched me deeply, thank you for sharing with us Flowers

MuddlingThroughLife · 29/09/2018 21:16

Thank you for your kind words everyone x

AnoukSpirit · 29/09/2018 21:22

Hmm, there's coping and there's dragging yourself along barely functioning putting on a brave, happy face for everyone because you know you'll be criticised for giving up/being negative if you don't pretend.

mumsiedarlingrevolta · 29/09/2018 21:24

muddling
Flowers
and a big un-mumsnetty hug
and Gin
your post was so poignant and heartfelt-haven't got the right words to tell you how powerful and moving your post was but just wanted you to know how much it touched me

tinytemper66 · 29/09/2018 21:34

I am not offended or feel patronised I just said I am not a superstar!

Hidillyho · 29/09/2018 21:35

I honest to god take my hat off to every single parent who looks after an ill or disabled child. I know a couple of people who have children with illness/disabities (both different) and parenting aside, these people are some of the strongest, selfless people you will meet

DragonboysMum · 29/09/2018 21:37

@MuddlingThroughLife I'm so very sorry. Such a powerful post, thank you for sharing FlowersFlowers

OP I didn't find your post offensive, I got what you meant. I've been doing it for 18 years now and really, there isn't a choice. You just do it. Because that's your child.
Hope your little one is soon well again.

XXaghast · 29/09/2018 21:45

jarhead123 Sat 29-Sep-18 21:04:00

I can't believe some have found this post patronising!! Some people just love finding an issue.

And let's not forget to bash the ungrateful disableds if they dare not lap up the scraps of pity eh jarhead?

Crunchymum · 29/09/2018 22:04

Muddling, what a very heartbreaking but insightful post 💗

LenGoodmansPickledWalnuts · 29/09/2018 22:34

If you are in a council area where the cuts include shutting down respite care for disabled children, please do help fight to keep these places open. Often parents are caring 24/7 with only short respite breaks and having those breaks taken away is too disgusting for words. We can do better as a society. Actions over words.

mineofuselessinformation · 29/09/2018 22:46

XXaghast, I genuinely don't believe that's what OP is doing here.
She's recognising how difficult it is when your child is ill, or incapacitated, for however long that may be - and sending a message of support to those in a worse position than her.
I'm sorry if you feel it was intended any other way - and please do read my previous post if you want to see my background.

Darkestnight · 29/09/2018 22:46

I've spent the last 18 years being a carer to my now disabled adult dd. Many hospital stays and appointments during her life time and will be all her life. But I have managed and that's because I have to. But I'm annoyed at all the cuts to carers and disabled people's services. The government needs to pay carers a decent living and not £64 pittance a week considering we save the NHS and government billions every year.

I'm no superstar I'm doing my duty and care for my dd best I can. It's been hard but Its my life and I'm use to it now. I'm trying to get a pt job soon.

Samcro · 29/09/2018 23:04

i have a severely disabled adult child. they are at the high end of disabled. but we have been so lucky that although they can't walk or meet their own needs, ,, feeding and so on. they are healthy. I was called brave the other day ......I mean WTF I love my dd and would do anything for her. why is that brave?
I don't think the op means to be unkind , but it is othering,

XXaghast · 29/09/2018 23:13

mineofuselessinformation

As I said I agree the intentions are good but I wholeheartedly believe it to be othering nonetheless.

I am 16 years in and never cease to be amazed at the idea that people dealing with disability are;
chosen
special
super
who knows how they do it?

But yet not allowed to be anything but grateful and pleasant when they point out that just being human actually means tired and broke and generally without any support system or social life working 24/7 and that this is getting beyond hard now, people are being made homeless and starving and committing suicide because of cuts.

Carers are called scroungers, are counted among the employed by the government to skew statistics whilst saving the social work budget hundreds of thousands of pounds per year per person. The OP wasn't saying that in the post but you can see how quickly placing us on a pedestal leads to berating us for not being saintly in return. It is disablism albeit well meant.

I am grateful for my children but will never be grateful for being considered different or accept criticism for not being "nice" about it.

XXaghast · 29/09/2018 23:34

Apologies for saying committing suicide (old habit but of course wrong terminology) when I mean people are taking their own lives due to not being able to manage any longer.

EwItsAHooman · 30/09/2018 00:09

The government needs to pay carers a decent living and not £64 pittance a week considering we save the NHS and government billions every year.

Amen to that.

For anyone who thinks carers are coining it in on benefits, Carers Allowance equates to 40p an hour for providing 24/7 care...