To think parents of chronically ill and disabled children

[TestingTestingWonTooFree]

...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.

They cope because they have to.

I’m sure this was well intended op but the tone of your op is off.

I really don’t think a hearty ‘my kid’s ok now but well done to you ‘cause yours isn’t’ is a good idea.

Good post OP. Couldn’t agree more.

Because you love your kids and want the best for them nobody choses it but if you dont do it no one else will my child is severly autistic and has learning disabilities he doesnt have chronic health problems thankfully.

I'll take it in the spirit it was intended, as a mother of one child who has a life-long chronic illness and another with a severe disability.
Yes, you're right - no-one truly realises how difficult and unrelenting it can be unless you are in a similar position yourself.
I'm pleased for you that your dc is recovering, OP.

You cope because you have to. I have a crap load of autoimmune diseases, am immunosuppressed and had spinal surgery
Nobody else is going to pay my bills and mortgage if I don't work, I'm single
On my rant about that, the pain management clinic can't do anything for me because I can't take a full day off work once a week to do a pain course. His suggestion was I go part time. I asked what money help I get and he looked baffled. None, so I can't go PT

It's like when people ask how I work as a carer. You just do it. Yeah I wipe up wee and poo, but I also chat and remember who likes perfume and lotion and how they want their brew. I wouldn't want to be left sitting in urine so I do it because if I don't, who will?

To be honest, I'm not sure whether to feel patronised or not?

People with disabled / chronically ill kids cope because they have no choice. It's a fucking horrible existence at times and unless you know someone with a disabled child very well you'll have very little insight into the reality of it.

I'm very glad your DC is OK and that you get to go home soon. I wouldn't wish the alternative on anyone.

(I appreciate that you are trying to be nice OP, but it is just a bit to trite for me!)

We do it because we have to. My 5 year old has had 20 hospital admissions so far. I envy the parents of the children who spend a night or 2 in hospital, get better and go home. Who have 4 or 5 visitors all the time making a fuss of them. My ds will just have me because his dad is looking after our other dc and everyone else lost interest in visiting him after the 3rd time.

I am no superstar!

I get where you're coming from op - I had a similar experience, my ds got viral meningitis when he was three weeks old. The tests to determine whether it's viral or bacterial (the scary meningitis) takes 48 hours, so for those 48 hours we didn't know for sure if it was scary or just "unpleasant". Fortunately, he was ok and we have had no lasting effects.

I am in awe of parents who have to face worse, I kind of do know how you cope, but not really. Not properly. I had 48 hours of it, which is nothing in comparison to every day, for months, years - decades. I really can't imagine that pain.

I have been doing it for 33 years now and will do it until death do us part. Luckily I had him young so I am still able to care for him. Mind if I don't who will?

OP - I do not find it patronising in the slightest and thank you.

I am a single parent to one sickie and one"normal"!!!
Life is hard and sometimes you just want to give up but you don't because you can't!

Until you walk, even briefly, as you have done - no one really understands. You hear the quite patronising comments of the fortunately married couple, when one goes away - they suddenly know how hard life as a single parent - like heck do they - 2 incomes, 2 lots of child care etc.

You have had a brief insight and learnt - thank you. You too would cope, because you have to - but that utter exhausation and stress levels you have had for a few days - will not stop for many of us - you now get what that means!

I think all the posts highlight there is not enough support for parents of and children with disabilities - there needs to be so much more.

I’m sorry that some of you found my post patronising. That’s not how it was intended. Thanks to the others who understood.

The hard part of having a child with a disability isn't so much the hospital visits, surgeries or having to leave your job even. Its not the relentless work - all parents work relentlessly for their children.

It's the fear for the future. You can go along as normal for a while and then all of a sudden that fear grips your heart. It's the unanswered questions. How will they do at school? Will they be bullied? Or rather - how badly will they be bullied? How will his personality change when he realises he's different. Will he still be the sunny toddler I have today or will he become shy and introverted?

And there's worse, much worse. The fear of underlying health conditions, syndromes yet to be diagnosed. Some parents wondering how many years they have left with their child. Some wondering how many days. Some wondering how their child will fare without them when they're gone.

Oh I meant to add, I hope your baby feels better very soon it's not nice to have a sick child, whether it's short or long term.

When you have a seriously ill child it's something you have to face head on and have no option but to deal with everything thrown at you while being positive and upbeat and telling everyone it will all be ok.

When you have a seriously ill child money takes a back seat. Your pay goes down to half pay after six months and then you worry about your pay stopping altogether. Then you tell yourself money is not important and you'll live on the poverty line to get your child well again.

When you have a seriously ill child and two other children you feel guilty that you are staying in hospital for weeks at a time with one child and leaving the others to either fend for themselves or eat over nanna's every day after school.

When you have a seriously ill child you feel terrible about the fact that the only time you see your other kids is when they are allowed to visit their sibling in hospital.

When you have a seriously ill child your heart hurts because even when you do get home inbetween treatments all your attention and focus is still on the one child - testing nasogastric feeding tube, administering medicines, changing dressings, taking temperatures, setting up over night feeds and getting up at 3am every single night to change the feed then feeling guilty for being constantly tired.

When you have a seriously ill child you become bottom of the heap. But that's ok. You'll do anything you can to hold your family together. You don't worry about hair or make up. You make sure everyone else is okay first and foremost.

When you have a seriously ill child and find out that they are in remission you start getting used to your "new normal" of endless hospital visits, phased return to school, phased return to work.

When you have a seriously ill child and you find out "its" back and nothing can be done and you're sent home you're lost. Totally lost but you keep that smile pasted on and only cry when you jump in the shower as quickly as you can because you want and need to spend every precious moment you can with your child.

When you have a seriously ill child you know when the time has come. You make phone calls to grandparents, aunts and uncles and tell them to come and say goodbye.

When you have a seriously ill child and they take their last ever breath in your bed surrounded by family you know your life will never ever be the same again.

Only on mumsnet would people find something in this to be offended at!

I didn’t find it patronising.

My daughter has had 25+ surgeries and dozens of additional lengthy hospital stays.

It’s really fucking shit but you just get on with it because you have to.

I'm another one who doesn't feel patronized, and thank you. I will say though that you really don't feel like a superstar and you often don't know any different. For me having a child 'with a colourful medical history' as our paediatrician puts it has shown me a com pletely different perspective. Every time we get home from a hospital stay I feel as if we have been given a new chance at life

Oh muddling

I also don't feel patronised by the OP, I think her point was well-intentioned and recognises that it is hard raising a seriously ill and/or disabled child. I agree though that you get on with it because you have to, there's no choice but to keep on keeping on.

Op I know exactly what you are trying to say. I too had a couple of nights recently in hospital with my DC sharing a room with very poorly children.

One in particular really tugged at my heartstrings. I don't think I will ever forget that wee boy or his parents.

I don't feel patronised either and appreciated the sentiment. I have 2 children with complex needs and one spends a lot of time in and out of hospital . To be honest you get used to it and I go into hosp mode when I am in there . It is not nice sleeping on a ward ( though I use the phrase loosely as often not much sleeping goes on ) but we know the staff well now and it is a bit of a home from home. You will not here me complain about the NHS as we have always had excellent care. X

muddling

I would have posted something similar once OP, but I’ve read too many posts on here where people have said they have no choice and don’t really like to hear it because it’s patronising.

I think you meant really well, but hearing how it can come across and listening to people when they say that can also stop us from saying the wrong thing, IYSWIM

Very glad your DC is on the mend.