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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to stop taking DD to family gatherings

17 replies

LanaDelRana · 31/07/2017 10:12

I am going to try to keep vague as this may be outing. My 3 yo DD has Cystic Fibrosis, and after 3 years most of my family still don't seem to take it seriously.

She has to be very careful about certain environmental bugs and there are so places/things we have to avoid as the risks are too high.

Catching the common cold or a cough can be very hard for her to shift as the mucus she creates is thick and sticky and hard to cough up so she has had many hospitilisations of 2 weeks each time just to shift a cough. When she does start coughing she immediatley has to go to a high strength anti-biotic for 2 weeks, this is all to prevent permanent lung damage caused by the infections, and it is this damage which ultimatley shortens the life span of sufferers.

We have to avoid coughs and colds for this reason, obviously with her starting school in a few years (September baby) this is less avoidable but at present we ask that anyone with a cold (even just a sniffle to them) or cough does not come to our house, or if planned to see them they can let us know and we rearrange. Most of my friends are excellent with this.

The last time DD caught a cold the cough went on for 6 weeks and I was up giving physiotherapy (patting of the chest/back/sides) throughout the day and night as she could not bring it up and was so poorly.

I generally avoid big gatherings where possible but do like DD to know her extended family of great grandparents, my aunts, uncles and 2nd cousins. However almost everytime there is someone unwell who will come and not let me know. At christmas her aunt came to our house with a chest infection and just said she wouldn't cough near her, we recently had a family birthday party and the first thing a family member said as we walked through the door was x has a heavy cold, I have told him to keep away from DD though.

I am getting so fed up with this despite me telling them all over and over the importance that they just dont seem to care and I want to avoid now!!

OP posts:

tiggytape · 31/07/2017 10:20

This reply has been deleted

Message withdrawn at poster's request.

elevenclips · 31/07/2017 10:25

What stupid selfish weirdos!
Yes I'd not bother taking her.
And if anyone arrives at your door ill, turn them away. Tell them that catching their germs will shorten your dd's life. Morons.

Original poster

LanaDelRana · 31/07/2017 10:29

You have summed up my feelings entirely tiggy and that subject comes up regularly about not being able to avoid bugs forever and school etc. but there is a balance and of course there are risks everywhere but DD being exposed to a bug that could cause her to be very unwell for weeks is not worth it for a few hours at a family dinner when it can so easily be avoided.

I never expect anyone else to have to change their plans or be uninvited but always just ask for a heads up and then we just wont come, and as grown adults most are fully aware you don't need to cough over eachother or be in close contact to pass on the cold, its easily done spending hours in the same house, touching surfaces etc.

OP posts:

TyrionLannistersShadow · 31/07/2017 10:42

I think you are definitely not being unreasonable, they're putting your child's life at risk. I had 3 siblings with c.f. so I completely understand, you do what you need to to keep your child safe.

gunsandbanjos · 31/07/2017 10:59

YADNBU, your relatives are being incredibly selfish.

It's common courtesy to let people know you're ill before visiting to give THEM the say on whether they will be exposed to it, particularly important given your circumstances.

I was meant to meet someone Friday night for an important appointment, came down Thursday/Friday with a dreadful cold. Phoned on Friday to say I was happy to come out but it was totally up to them if they wanted to reschedule I completely understand, we rescheduled. It's just bloody common courtesy.

SafeToCross · 31/07/2017 11:10

Yanbu. If anyone challenges it definitely explain your decision.

Original poster

LanaDelRana · 31/07/2017 11:31

Yes definatley, even without DDs CF I still wouldn't want to knowingly expose my DC to a nasty cold right at the start of the summer holidays, but her medical problems add to it and I'm so fed up explaining myself and it ruins our day trying to avoid the ill person, which was easier when she was a baby but harder now she is older its impossible.

OP posts:

FrankieStein · 31/07/2017 11:43

Bloody hell. Your family seems to be my family in disguise.
Why is it that some people who don't live with these conditions seem to think that they know better than the people who deal with them on a daily basis?
(My family are old school east end, There's hundreds of them, and if your opinion doesn't match the "family opinion" then it's wrong, they're all flipping experts in their minds)

Hugs

I can't offer any advice, because I still haven't worked out how to deal with this hive mind mentality, except to do what's best for you. If that means her only seeing them one on one when you've checked them for health issues first then so be it

Glumglowworm · 31/07/2017 12:13

Yadnbu to want to protect her, you're not being precious, people are selfish if they put their own wishes above a small child's health.

Don't let anyone in your home who puts your DD's health at risk, it's that simple. If you're somewhere else, leave immediately.

Original poster

LanaDelRana · 31/07/2017 16:13

Thanks everyone.

I find all of our friends are brilliant and know to avoid when they or their children are poorly, it unfortunatley seems to be her family which hurts the most as they don't seem to care the risks they are putting DD in.

I understand it is our 'problem' as such so I wouldn't expect anyone to change their own plans if they wouldn't have done anyway (runny nose or similar) just a courtesy message to let me know they aren't 100% and then I would just keep DD away, it is horrible getting that sinking feeling arriving and being pulled to one side to say someone is unwell and by that point I can hardly say come on DD lets go home!

OP posts:

user1497480444 · 31/07/2017 16:16

Yes, stop taking her, and see some of your relatives on an individual basis occasionally instead.

user1497480444 · 31/07/2017 16:20

Look into your family tree, there might have been other sufferers you are unaware of, a few generations ago they are likely to have died young and possibly undiagnosed. This might make others realise what you are up against - I'm not wishing any of your relatives HAVE died young, but if they are already dead, and can help raise awareness, I am sure they would have been glad to help.

Hope you know what I am saying and don't sound too brutal!

Incidentally, I am 50, and a couple of school friends of mine had CF, and didn't live to 30,

but now i am aware of many people living full lives and still going strong at 40+

Obviously, it needs taking seriously, and the best care is needed, but it is no longer the life limiter that it used to be.

Original poster

LanaDelRana · 31/07/2017 16:24

user Whilst I understand where you are coming from, living with the disease it most definatley is still very life limiting, and DD having a life expectancy of only 40 doesn't seem very 'full' to me. In the CF community there are still very many that pass way way younger than 40

OP posts:

ohdearymeno · 31/07/2017 16:32

Lana, you're definitely not being unreasonable! I've taught a boy with CF (secondary) for the last three years and we always sit him well away from us if we have a cold/ virus or other students who have turned up to school ill. If it's a very 'buggy' time of year and we have lots with colds, we provide work for him to do from home.

Using 'she'll soon be at school' as an excuse just isn't good enough as even there, everything possible will be done to prevent her from being around people who are ill.

user1497480444 · 31/07/2017 16:41

yes I know, but what I mean is individuals i know who are fit and well at 40 have a full normal life expectancy, which is SO much better than the children I knew who were born 10 years earlier... hopefully, as your DD grows up, better treatments and more knowledge will mean her life can be near normal.

I am a teacher, and have taught a child who has a mother with cystic fibrosis

Unexpectedbaby · 31/07/2017 17:16

I feel like this is some weird, selfish ignorance with regards to CF. I have a friend, late 20s with CF. she has childhood friends who still don't get it. Despite her having to regularly have oxygen therapy and carry an oxygen tank with her there have still been occasions where they will visit when they or their DCs have colds.

I don't get why people feel the need to share their germs with anyone, let alone vulnerable, sick people!

YANBU to avoid family gatherings. If your DD grows up without a close relationship with extended family because they can't be considerate enough to acknowledge how serious of a condition she has I would say it is very much their loss and they don't deserve that relationship.

poweredbybread · 31/07/2017 22:42

Do you think your family really realise that CF is life limiting and the best chance she has for a full and as long as possible life is by trying hard ( where you can knowingly ) to avoid the damage to her lungs that chest infections will cause. They need to realise it's not just about your daughter get immunity. Can you try telling them that her lungs are 'scarred' by each infections she gets. Might be a way to get them to understand. This is a big deal and not you just being precious. Put her before them, they have had a good chunk of their lives already she deserves hers.

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