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 !

On the flip side, I never apply for anything such as short breaks etc because I’m so aware of finite resources.

I never know though if I should. We do find it tricky to access things, and I see local services being either used by those with less need or even closing unused as we all just end up staying in

Yes sirzy I find charities are extremely strict and do check criteria.
My consultant had to directly be contacted and asked if she was classed as terminal or life threatening.

The only things we have had was Merlin magic wand and now the wish charity.
Last year we were in a bad place and was refused by family fund.
Even if I’m like what about it I try not to focus on others who have got it

who have been sick for 6 years without actually dieing so how can it only be things that are terminal.

This is unforgivable.

I know you're trying to see her side but she used your child being alive as a dig towards a charity.

Absolutely disgusting behaviour.

I knew someone who always seemed jealous that 2 of my children had died. She resented any sort of attention I got for it and when another child of mine was diagnosed with a condition (nothing life threatening) her dc started having the same symptoms etc. Since I cut her out I've noticed a few people who surround themselves by people who are ill/have ill relatives/have had a recent tragedy, and they almost feed off the grief and upset and use it for attention for themselves. Anyone who has truly been there would rather not have the attention at all.

It really does sound to me like your 'friend' is one of these people.

Friend with the diabetic child (sorry I can't remember if that was friend 1 or 2) is being massively unreasonable to say those things. I've got dc with sn and we have had some scary moments with some of them but nothing life limiting thank goodness. So probably fairly similar to your friends dc. Having dc with sn is hard, really hard at times and also sometimes scary but I imagine that with a child who is life limited you have that awful scared feeling all the time as well as the general knackerdness that comes with having a child with complex needs. In an ideal world your friend's child should be able to get the wish too but resources and funding are limited. That must be frustrating for her but she shouldn't be taking it out on you. Your child's needs are much greater than hers.

That’s the thing I think she struggles with.

• she doesn’t see the difference between the 2 on so will put some more detail

• daughter was born with a severe birth defect that she shouldn’t of survived but did.

She then went in to right sided heart failure and had mutiple heart defects And then went in to another organ failure which is “ managed “ in extent she is attached to machinery 12-16 hours a day and is immune compromised. She has mutiple tubes and is vuberable to infection amongst other things. She requires 24 hour care. Only goes to school part time as even attached would need nurse and well there is no funding.

But to her this is the same as she says that every night there’s is a risk he won’t wake up.
I’m not sure if she knows she does a bit OTT or whether she just is really anxious and believes it ? That’s why I’m trying to see both sides.

You’re putting her inability to differentiate between life limited and ‘scary’ before yourself or F1. He inability or unwillingness to understand the difference is going to destroy you and your friendship with F1 if you’re not careful.

If I was F1 I would be ok with staying friends with you IF you explained your thinking to me and we were ‘a team’ about it, but if you just said you can see why she feels like that I’d distance myself from you. I wouldn’t want to be friends with someone who seemingly agrees that my child can’t be ‘that terminal really as they’re still here’

Be very careful, I’d hate you to lose the support and friendship with F1 because of F2.

MyFriendGoo5
You are being offensive and ignorant. An autism diagnosis isn't easy to fake
I've seen it on here before when posters don't believe disabled toilets should be used by those with a non physical disability
You have a lot to learn

SmellsLike*

I never said her child isn't Autistic, her child is very much Autistic.

He has Autism. But his Autism doesn't prevent him from accessing holidays, day trips or many other experiences. He gets these in abundance. Frequently.

So why take a holiday space from a family that need it ?? Or is that ok because it's free ??

My child also has Autism, he also is able to access holidays etc therefore I don't think it would.be right to make use of something just because I can that would mean those more in need go without.

Autism. Is a word that can mean many things, I could say my son's Autism means that he's unable to leave the house, that he's unable to communicate verbally etc none of which would be true. But under the diagnosis of Autism could well apply.

I’m not being unwilling to agree with Friend 1 I do agree with her.
I was just trying to go through the emotions in my head about why friend 2 felt the need to say it.

I was just trying to go through the emotions in my head about why friend 2 felt the need to say it

She legitimately worries about her child and imagines all the 'go bad' scenarios and maps out how she'd deal with them. This is natural for any parent irrespective of the seriousness of the illness/condition.

There's no rationality to how you worry about your child. But it's brought into sharp relief if you know people with far more serious health issues that their children have to deal with, so to justify your feelings you hang onto all the worst case scenario outcomes for your own child and let them become real potential scenarios in your head...just so you don't feel like a fraud for worrying all the time when someone else clearly has a bigger worry to carry.

The charity turning her child down has basically shot down this defence and made clear that her worrying whilst natural, in the grand scheme of things is not for a condition that has a high mortality rate or substantially reduced quality of life whereas sadly your child and friend 1's child does have that factor to consider.

She's responded horribly for one of two reasons:

1. Being rejected diminishes her worry for her child so she's lashing out
2. She's an entitled arse who cannot abide someone else getting something nice if she (or her child) cannot

Only you know your friend well enough to know which of these rings true and whether you can accept what she's said and continue the friendship.

Your friend was absolutely wrong. The charity has those criteria for a reason and she was absolutely, despicably wrong to say the things that she did. However, type one diabetes is one of the most misunderstood conditions out there. There is a particular kind of grief to having to make decisions every day and night about dosing which could potential kill your child (as well as causing them long term damage). I'm not saying that this grief is anything like that of parents of children with terminal illnesses but I'm just trying to explain her perspective. Unfortunately children with type one diabetes do die, as do young adults. If she's only two years in she is probably in a state of hyper vigilance and will likely be waking up twice a night to draw blood from her child, worrying about what is happening to the child in between. Her child has an incurable disease and with the reality that they could have a medical crisis at any time of day or night. Because the treatment is constant, there is no let up and she will likely have had to pin down a screaming child for an injection on a regular basis because otherwise that child will die, very quickly (matter of a few days). Even without these immediate threats, her child's life expectancy has been considerably reduced and her child will, almost certainly, at some point develop complications, not matter how well the condition is managed. Society will misunderstand, minimise and make fun of her child's condition, and make her feel like she is a dramatic, anxious attention seeker if she tries to explain the realities.

After a while, she likely won't see it like this. It will be normal to deal with constant injections, emergencies and hourly fluctuations in her child's mental, physical and emotional well being. It will just be something they all live with.

Again, she is absolutely wrong to say what she did and to lash out. But please don't question her experience of her child's condition when you don't live with it.

BTW I believe that Merlin's Magic Wand is sometimes able to grant wishes (days out at theme parks) for children with type one diabetes if that would be of interest to her (not applied myself but have heard of people who have).