How would you tell DC you’ll never be “normal & healthy”?

[ThemysteriousH]

DS1 (11) has become understandably really angry and frustrated that I don’t have the capabilities or energy compared to the parents/guardians of his peers.

I do all I can, put my full energy into everything but that inevitably leads to a crash.
I’d just learnt a balance of listening to my body, doing the most I can, but it’s not enough for him or DS2 (8), who has various ALN.

My heart is breaking for them. I’m trying so hard. It’s only now they’re realising we have slightly different lives to perhaps others.
I have tried to protect and hide as much as I can.
Every time I have an appointment they’re worried it’s going to end up a hospital stay (which has happened a few times), and when I reassure that won’t happen I’m not believed.

Basically feel like a shit mum and don’t know what to do.

Not to go into great lengths of my various issues but lots of autoimmune things that affect most organs & now some oncology stuff (nothing serious, that’s blocked away in my head atm).

Im hoping to go to work on reduced hours so they have some sort of normality and it helps my mental health tremendously. I’ll hopefully work it around when they have a sleepover at my parents so I’ve the next day to recover.

Not sure I’ll get any replies, feels better just typing this, but would genuinely appreciate any answers.

So take it easy, offer to do things which are more low key - take his friends to the cinema, or farm park?

Where is their father in all of this?

It IS hard. Maybe talk to school about young carers and see if they have any groups or can do some support to normalise it for them.

Every time I have an appointment they’re worried it’s going to end up a hospital stay (which has happened a few times), and when I reassure that won’t happen I’m not believed
This is not a criticism as it's an awful situation to be in but I wouldn't promise things that might not happen as it undermines trust. If they know it's a possibility that you'll be in hospital, acknowledge this and tell them you don't think it will happen- and what the plan is if it does. You don't have to tell them everything but what you say should be frank and honest. Having been in a similar situation, brushing worries aside actually caused more anxiety.

I’d reframe this - DS is 11! From what I’ve read on mumsnet over the years, that is a tricky age anyway and all they do is get frustrated and moan whatever you do! I suspect if you had bundles of energy and dragging him out to activities twice a day every day, he’d be moaning about that! So cut yourself some slack for starters…!

I'm sorry you're in this situation. I don't think I'd sit them down to announce their lives will be different from peers forever due to chronic illness. I'd talk about it when it's relevant to plans and always in relation to coping, management ideas etc. I wouldn't want to give them a heavy weight of feeling it's their job to protect you or moderate their childhood fun to minimise your physical strain.

Hiding is not always protecting though. It's sometimes enough that they have an inkling that something isn't right but they're too scared to ask and imagination starts to take root.

Can you have an honest (not overly detailed) conversation about your main diagnosis, or the one which affects the activities he is wanting to do?
Can you find out exactly what he's feeling left out about?
If there's a specific activity, can a friend's parent or relation take him if you pay?
Do his friends' parents know about your health issues?

It's a tricky age, soon he'll be able to organise and go to more stuff on his own.

What activities do you feel they are missing out on?

my 9 year old loves computer games can you do things like that which don’t require physical fitness?

i think kids value time with you, the activity is secondary to that, it doesn’t need to be big.

Don’t try and be something that you aren’t.

Just be honest.

We all have strengths and weaknesses, good days and bad days. Today is a bit of a bad day but I expect I’ll feel better tomorrow.

We all need a bit of help from other people sometimes.

Treat it like the weather. It just is. We plan as best we can.

You can’t change it by wishing, neither can he. You are making it sound optional by trying to change it because he is complaining. It isn’t optional. It just is.

Be honest. He can be your ally but not when you keep him out of the loop. You’ve nothing to apologise for. Everyone has different lives and this is your and his life. I’m sure you love him and do your best for him. It will do him no harm to grow up with expectations on him to help out or find other ways to expend his energy.

I've got s serious autoimmune disease which has turned my life upside down with symptoms and hospital stays. We did the opposite to you and raised our son to know about it and understand it and to know from age 2 what do do in an emergency. He's now 10 and like a mini scientist/dr.....he understands fully what's happening and why and how that effects our life but because he's been raised like this I think it's easier for him. Sometimes it's best not to cover it up.

Op I bet you look completely fine like there’s nothing wrong with you, so I’ll make some assumptions. If you have a visual disability people treat them differently as they can see the illness etc. With a hidden you will be treated and viewed differently, people don’t understand how one day you are fine the next totally fucked.

My children are a lot older than yours and they can’t really understand how I can be ok one day and knocked out couple days later. Explaining to them the ins and outs of my condition was pointless. They know everything but they can’t SEE it. The only one that understands is my youngest because he has lots of hospital appointments and a huge op because of his issues.

When you had a hospital stay who did the kids stay with? Do you think maybe they (who they were with)spoke like it was a catastrophic event you were admitted and they acted ott. Thereby causing whilst unintentional a rather large issue hospital equals a stay or near death.

Op comparison is the thief of joy you can’t compare yourself to his friends parents, you ARE NOT a crap parent. You just got to make the most of the hand you have been dealt with. Make a list of stuff you can do and look to go places or activities that you could manage. Google is your friend here, you could see the research as risk assessment.

OP I have lupus. I do lots of stuff with the kids more than is probably good for me as it causes problems for a couple of days after. My attitude is it’s not going to kill me so fuck it.

@Disabilitydiscrimination their dad done a disappearing act.

@timetobegin my eldest goes to young carers who do give him nice trips but not much emotional support, it’s something I really need to look into, thank you 🙏

@Anarkandanaardvark I didn’t think of it that way tbh - that actually makes a lot of sense!

@TheKingCobraIsNotStrictlySpeakingACobra honestly it feels like he’s changed overnight and just hates me whatever I do! I can’t win atm it feels like & I don’t know why 😔

@5475878237NC yeah that’s very true, I don’t want to make a big thing of it, it’s always been our normal, it’s just the when they ask questions if that makes sense?

@PFBGirlAlert Tbh we don’t really have any “mum” friends apart from a couple, but recently they have helped with the odd little bit with DS2 which has been good. We’ve a lovely big garden that I’ve said the local children can come play in any time.

@HaPPy8 I don’t feel they’re missing out loads but more of things like big all day activities like theme parks - not that I think they’d like it, or going on holidays.
I have booked a mini weekend break though which is something for us to look forward too.
I don’t drive and we’re quite rural so there isn’t really much to do and when I ask what do they want to do it is always “I dunno”.
One thing I haven’t done is gone swimming with them but it’s something I’m working towards as a goal.

@KeirSpoutsTwaddle that makes a lot of sense actually! I like the analogy of treating it like the weather :)

@SantaBarbaraMonica that's true, he does have quite a fulfilled life compared to some others as he has young carers & things we do. He also is religious and has youth groups as part of that.

@Birdingbear that sounds really debilitating bless you 😔 a little scientist in the making sounds fantastic and like you’ve a very knowledgeable child, perhaps that’s the route I need to go down.

@Princessbananahamock they stay with my parents when I’m in hospital who normally downplay it but my last visit they brought them in to see me whilst I was in ICU out of it which really hasn’t helped 🥺
I over push myself too then end up bad, I’m trying to learn to pace myself better.
lupus is a fucker - especially with this weather!
DC call me a vampire because I hide from the sun 🤣

I think I’ve replied to everyone, as you’ve all taken the time to comment I wanted to reply.
Thank you all