Friends arguing over a charity wish ! I’m not sure which one is being unreasonable but started with me 🙈

[Fuedsandfury25]

Name changed as really outing

I have 2 friends who aswell as me have disable children.
We met in nicu years ago.
I’m really going to try and not to drop feed so bare with me.
( changing a few details )
My Child age 6 has mutiple systemic organ issues / failures. However you would not know if you met them and was fully dressed.
Spends a lot of time requiring treatment and is vulnerable.

Friends 1 DS has chronic health issues including heart / bowels and classes as life limited also.

Friends 2 DD was originally in nicu for being prem and later on diagnosed with a mild form of CP.
2 years ago Her daughter was diagnosed with type 1 diabetes.

Now we do always try and support each other but the cares do vary significantly for the children - but I live by the Moto that it will effect parent no matter what is wrong with child.
( the children are now also very good friends with one another)
I applied for a wish form a charity for daughter there is a strict criteria, life threatening or critical illness.
The charity rings consultants to verify condititions and ultimately it is down to them however there is a list of conditions that are not included like
Autism
Cerebral palsy ( unless critical )
Diabetes
So it all come ahead when we were outside hospital ( they were visiting daughter ) and I bumped in to consultant the charity were finding it hard to contact. I told him and he said not a worry and gave me an alternative email for them to contact.
This meant friend 1 had asked exactly how you went about it etc
So I filled her in and told her how to do it.
Few weeks passed and friend 2 had decided to try and apply then made a snarky comment when friend 1 was accepted and she wasn’t ( all sounds pathetic right ... correct )
Then it got out of control when friend 2 made a post about how said charity was discriminating against type 1 diabetes, suggesting that it should be classed but in the post suggested it wasn’t fair because that had accepted 2 children ( clearly aimed at ours ) who have been sick for 6 years without actually dieing so how can it only be things that are terminal.

Well friend 1 hit the roof and debated that type 1 diabetes is mostly manageable and unless there was secondary issues to it, ( should state in the 2 years since diagnosis they haven’t been in hospital due to it ) then it wouldn’t been seen as critical or life threatening.

It’s all got out of control in the end, I told them I wasn’t getting involved but they both think I’m being unreasonable for not defending them 😂

So I see it from both sides
It probably is hard when you have a sick child to be told they are not sick enough for a wish but on the other hand it’s maybe hard for parents of “ life limited “ diseases to be told that how can that be possible when they are still alive.

I don’t want to lose both Friends over it especially friend 1 as we are a great suspoort to each other !

I am struggling to see Friend 2 POV at all. Diabetes is a manageable (albeit as Lougle said life impacting disease).

You and friends 1 have children with life limiting things is different

How on earth does friend 2 think that comment was even remotely ok

I would be disgusted with friend 2, she sounds jealous of sick children, I'd be telling her to stop playing games of who has the sickest child top trumps and to have a chat with herself

Friend 2 was horrible to say that about the six years. I don't think I could associate with her after that.
You didn't decide the criteria, so even if they were blatantly wrong (which they don't seem to be in this case), it's bugger all to do with you.
for you and your dc

I love 'restbite' - I'm picturing someone finally getting to put their feet up and enjoy a quiet slice of cake for a change, instead of running after everyone else. - perfect word for it! 😁

Don't you just love Disability Top Trumps.

Friend 2 IBU.

Ditch her, I would have and I have for less.
One ex-friend of mine said my child couldn't possibly be as bad as hers (same diagnosis) because he was verbal and hers isnt. I kicked her to the curb like a fucking shot because she knows I've done years and years of intensive work with DS and still continue too to this day.

Get rid of the witch

Friend 2 is an arsehole.

It’s not discrimination by the wish charity, for goodness sake. If there wasn’t criteria for different charities then each Country would just have one, enormous charity which did everything- research, respite, food banks, home improvements, disability access, heck - lets just add in all the animal charities too.

It’s obvious friend 2 is feeling rather overwhelmed. We have kids with disabilities. Is it hard work? Yes! Do I think we’ve got it harder than anyone else and therefore deserve a trip to Disneyland? Heck NO! Would I begrudge a child with a life-limiting illness the chance to have an absolutely amazing wish come true? NO!

I think your friend needs to apologise, and maybe reach out for a bit of help.

Locally, we have charities and support groups specifically for children with type 1 diabetes, and also there’s support for those with/caring for those with CP. is your friend in touch with anything similar?

Haha firstly sorry about typo in replying inbetween mopping floors and not checking before I press sense 🙈😂

Ok regarding me supporting friend 1, I have completely seen her side and I was completely in agreement what she said was wrong
I suppose I was just trying to make sense of what friend 2 had said and try to put my self in her shoes to see if it made a difference.

Eggysmum I hate it ! I have been in that situation way to many times I think that’s why I didn’t want to belittle friend 2 either because I didn’t want her to think I was down playing her difficulties.
Hope that makes sense.
Basically I am rubbish at conflict and I spend my life in a ward full of parents complaining about minor things after a 2 day stay that I have just had to learn to put my self in their shoes.
I didn’t want to hurt friend 1 either.

Erghhhh send !!!!!!

I'm not playing down the impact of type one Diabetes at all, and it must be a terrifying burden to know that you are responsible for ensuring that your child's blood sugars are within the correct range, especially at night, when they can't tell you they feel poorly. However, there are systems available for continuous blood glucose monitoring for brittle diabetics. (those whose sugars are hard to control) and if the DD hasn't been in hospital at all with her diabetes, this suggests she isn't one.

If the charity has a criteria of critical illness, then that's the rules. Why doesn't she apply to a different charity with different rules?

Oh I wasn’t saying you was, I was trying to say it was my dilemma.
I mean I know in my opinion diabetes is not as life limited as either of our DC but I figured maybe that in her mind it is and maybe that is out of spite but worry.

I think you are being very generous to friend 2!!!

I have a child with autism and severe learning difficulties who attends a special school, many of the pupils have complex needs and life-limiting conditions. I couldn't imagine being jealous of a child being granted a "wish" I'm just glad my child doesn't qualify.
I couldn't remain friends with her after those comments.

No it sounds like you are giving her too much credit. She wanted the experience for her child, was naturally disapointed but then became malicious and grabby when denied.

No it sounds like you are giving her too much credit. She wanted the experience for her child, was naturally disapointed but then became malicious and grabby when denied.

This

It wasn't like she was fighting for research funds to help cure diabetes. She was angry that her child couldn't get a free trip to Alton Towers (or whatever) and was being grabby because she felt entitled.

What friend 2 said was cruel and unnecessary and she should apologise.
However, the simple and dreadful fact is that you both know your children's condition is life limiting whereas she has no certainty. Diabetes can be life threatening if not managed correctly. They can get very sick, very quickly.
The fact that the charity has rules that she doesn't match is frustrating for her and she feels like they don't see what she sees and do not understand the constant worry. This probably caused her to lash out in a destructive way. Now she has dug herself into a hole and probably does not know how to get out.
So you have two choices. Leave her to make it right with you both or try and speak to her about how she feels, emphasising that you do not make the rules and there are opportunities within the diabetic community for her daughter to experience something new via another route.

The other thing is whilst having a conversation, if you choose this route, is to be very definitive in your statements. There is a difference between life changing and life limiting, explain some of the milestones she will see whereas you won't etc. Whilst a child is well, it is easy to believe that it will stay that way. After all, you get everything; benefits, holidays etc. (In her mind) But you don't get to see x, y and z. I bet you guys would give everything up in an instant for a chance of a future for your children? So tell her this. You can be an ear whilst laying down the devastating facts for her to compute. If she still doesn't get it, walk away.

My child had a long stay in nicu plus long stay on children ward in his first year and multiple visits since then , he's diagnosed with a life limiting condition but like you said when he's dress and having a good day looks like a healthy child, I get what your trying to say about friend 2 as I too have to hold back my initial gut feeling when people are complaining about a short stay in hospital etc. But being honest when you fight every day every second to get the help and support for your child to have someone who is meant to support and be there for you come out with that statement would hurt me so bad that I would have to cut contact. I've had to do it with friends who don't get how lying to me about there child being ill isn't just oh dear he got a d/v. It could potentially be a 9 month hospital stay or even that I lose my child from just a normal childhood illness. That is what your friend isn't getting. It's terrifying living day in and day out knowing what the future will be and you can't change it.

Jamie you make some good points and that’s the thing as as well we don’t know either.
My daughter wasn’t meant to survive birth But is now 5 she is at risk of fatal complications but it’s not as clean cut ( think cancer ) so which as you say I do try and take in to consideration when trying to find the words for friend 2.

F2 is being unreasonable in thinking that a charity isn’t permitted to set their own rules for eligibility (as long as they’re abiding by the law of course). Complaining they exclude xyz, irrespective of what that is, is just plain rude and out of line. They are a CHARITY, not a Govt Dept.

Initially that’s what I would have told her and I would have suggested she research other charities.

However, her comment about the other child/children not being terminal as they’re still here 6 years later 😳. Fuck me. There’s absolutely NOTHING that would allow me to forgive her that comment. Nothing.

Explain your thoughts to F1, hope she understands and distance yourselves from F2. F2 needs help, but not from you two, you have enough on your plates without dealing with her warped thinking AND you do NOT need to put yourself in her line of fire. She’ll only get worse.

It’s a shame for her child as the three of them are good friends, but you need to prioritise yourselves and your two children, because you and they will hear some nasty things from her as they get older and none of you need that.

I know it’s not easy, especially when you’ve been there from the beginning and helped her so much, but I really think you need to cut ties 💐

Friend 2 is being ridiculous.

We see this a lot sadly........someone recently took a weeks free holiday in cerebra house. The holiday home only has a.maximum of 52 vacancies a year and is for kids who find it difficult to access holidays.
The child 'only' has Autism (( I say that as there are no, physical needs )) and last year enjoyed a.cruise, various trips to London, breaks away with cadets and God knows how many trips to local attractions / caravan parks etc.

Absolutely no.need to take away a weeks break from a family who genuinely need it.other than for.the.fact the family want something for free. I for one prefer not to apply for charity funding as I know how lucky we are, I'd rather those who really needed it got more.

But in that case surely that charities procedures to allocate is what needs changing. If they applied and where accepted then are they really wrong for going? I think there are problems on both sides in that one!

Yes I was shocked at her comment and it took me a few days of thinking to try and see it from her side.
I know when applying for charities before ( we were in really strong need of help ) I was upset ( didn’t actually lash out at anyone thought ) just silently upset that her condition wasn’t well known enough to get her help when it was equally as life threatening.
Maybe that’s where my judgement swerved.

Sirzy, they'd have lied on the form. People think that doesn't go on are wrong. And because Autism is such a massive, spectrum. A 'diagnosis' is easy to manipulate to sound a lot worse than it is. Knowing people whose kids have cp etc that have been turned down or on the waiting list for God knows how long I found it pretty disgusting.

Personally I think these charities need to do more checks, and ask for info from professionals. Instead of blanket bans or just accepting people who have a diagnosis and get DLA. Because the reality is someone taking away from a charity when they don't need to means someone misses out who does need help.

But if the charity didn’t do checks then they are still to “blame” just as much!

Any charity we have applied to have very clear criteria and checks