My daughter is “ jealous “ of other child for the most awful reasons

[Notintheparentingbooks]

My head is going around in circles about this and I am going to try and not drip feed.
daughter ( older primary school age ) has complex health needs which are life threatening. She requires a lot of care and spends a lot of time in hospital. She requires daily IVs at home for a period of hours a day and IV medications etc
she had everything from blood transfusion’s to femoral lines and had permanent IV line plus feeding tubes. Over the course of years she has made many friends in the oncology world due to being in the same sort of nursing teams / hospices / hospitals.
she had made some very good friends and a few friends with her condition but less so because she is the only one in our community teams books on her treatment but in her hospital she has made a few.
we have in the past had a few upsets over her friends ( oncology ) and seeing them receive things like super shoes etc which she can not be referred to by community team because she is not oncology.
we seem to so far been able to sort of bridge the gap and I would just do what the charities do myself if that makes sense.
now before I carry on I should say she is the sweets timid child and would never mean to be malicious.
she spends a lot of time off school because of the hospital treatments.
the last few weeks have been challenging. Sadly a student of the school was diagnosed with cancer. I am extremely sad for them and so is daughter. She has struggled with the schools response to it and it has taken be my surprise. ( fundraising, announcements, etc )
I should say she isn’t upset that she is getting it she is just I think confused why no one has ever remotely offered similar to her.
I felt awful because I did not know how to handle the situation - I did speak to the school who were very understanding and I was worried that daughter would say something at school and they would think awful of her - but realistically it won’t change anything. I need to make her understand why.
the school to me was understanding but I do know this will now go on for a while and I am trying to navigate it the best I can.
I am so worried that she will be seen as a child who is jealous in a bad way.
she doesn’t want to participate on the fundraising day etc and seems fairly unsettled by the whole thing.
I am going to try and sit down and talk to her properly and take her for some 1-1 time this weekend to try and make her understand

how do you make a child of this understand though ? The questions she is asking I don’t feel like I have the answers to.
she has always been super supportive and not really moaned about anything - so this has taken me quite by surprise !

Sorry just saw it’s a robot funded by the hospital charity.

If this is a general hospital charity rather than an oncology specific charity then can you not ask for one for your DD?

@minipie i don’t think they are really really aware though.
i think they don’t really understand it.
we had training last week at the school for her line and I was surprised that the staff including her teacher had to ask me why she had one 😂🙈

Think this will start to derail a little bit - just to confirm no one believes oncology patients don’t deserve what they get - they do
no one believes it’s easy and we all have so much sympathy and empathy for what they go through.

it is a fact though that there is widely more charities available for them- that is not their fault and they deserve them but it is true.

Op you and your daughter sound absolutely lovely and I have no advice but I just wanted to send lots of unMumsnetty hugs to you both and hope something can be done to even up the unfair imbalance of support somehow. People like nice neat easy categories don't they, and it's so unfair that your dd has struggled for ages without much recognition, no wonder she feels upset. I don't blame her for that one jot and you were right to speak to the school. If they have any sense they will take on board what you said and sort out more support for her.

I do understand exactly how you feel, as have a daughter with another lifelong condition that required alot of medication, hospital, intervention, (although not to the extent of your DD) and time off for me, as I hadnt been able to hold down any kind of work because the condition is so unpredictable.
A case near us highlighted this - go fund me set up by families and friends which raised more money than I could ever dream of, to allow a parent to take time off to deal with an ill child. Not that I would want to have had the prognosis they had, and thank god, with treatment, he made a full recovery. But the money raised and the fundraising they did to allow him to have treats, days out, holidays, and mum off work, was into 6 figures. Meanwhile my daughter had to sit back and watch and wonder why the community didnt seem to care about her, lifelong struggles, nor that of a friend who had a similar condition / illness to the original child, but wasnt subject to the fundraising.

OP no one thinks that's what you are trying to say. Honestly.

People want simple stories that they can get behind and make themselves feel better that they are doing something to help. People tend to shy away from problems they don't think they can fix.

What I was trying to say is that the reality is messy and complicated for everyone involved.

That’s pretty crap of them really. I’m sorry. They should really be more on top of this.

Could you type out a sheet which gives details of her condition, the impacts on her, medical needs etc, that could be handed to every teacher that has contact with her? Apologies if you have already done this and it hasn’t helped.

OP:
Each of those should be contacted and explain your DDs condition and struggle.

I am mad and jealous FOR your DD! It sounds like she struggles every day and she SHOULD get some notice for that!

I am going to assume she has something pretty rare or an orphan disease? I would make sure to explain that to the organizations on that list. Tell them she feels sad and left behind. She deserves to have her struggles acknowledged.

OP, you sound like a truly wonderful mother through very difficult times.

Your poor daughter.

Years of feeling unwell and hospital appointments, I can 100% understand her frustration and confusion.

In her place I would also be feeling very sorry for myself.

I certainly couldn't imagine anyone thinking badly of a child feeling that way.

I think you need to stress this as a MH challenge for your daughter who has had to process so much and has every right to feel a bit sorry for herself, particularly as she seems to feel a bit unseen, despite everything.

Very normal to want to be fussed over as a child.

Think how children love their birthday and being fussed over at home and school.

Hers is a very normal response.

She sounds like an amazingly resilient child.

Poor little pet.

I'm not sure if you know but CAMHS actually has 2 lists. They have an urgent list, which in our area was only a year! Not great, but still better than a 3/4 year wait.

So for instance if it was an issue that was critical / life threatening / trauma related, she would be considered.

Maybe her paediatrician could re refer her to CAHMS.

I agree with so many, that your daughter's feelings are valid and that she needs to be allowed to express them and feel that she is not bad for having them. Eventually she will have to find a way to accept that this unfairness exists, but first she needs the chance to express how unfair it is and how it makes her feel, and realise other people see the unfairness too.

I hope you can take up the offers that people have made to contact those involved in the Supershoes, as that seems like something that companies and charities would be able to do for her - or setting up a donation page if that help.

It doesn't seem fair that some authorities and hospitals are able to fund the robot and not others; I hope you can find some charities or funding bodies that will be able to help her get one too.

Absolutely.

My daughter’s condition is grouped with cancer by some charities (so she has a Macmillan nurse) and not by others (we weren’t entitled to a Clic Sargent Social Worker).

it’s a less than 2 in a million diagnosis so the only way I have found community is via international Facebook groups.

Sounds like it’s even more difficult for your family?

I have a plan about the robot if, panel at LA says no which I’m sure they will then I will ask them to consider it again if we removed daughters transport money to and from school which would equal around the same amount of money.

This!

My daughter is supported by the children’s hospital psychoscocial service, which is under the CAMHS umbrella but a completely different building and different staff.

Also, your LA may have a Thrive in Education team? They are employed by CAMHS but work in schools.

She is deemed as non urgent within the cahms at hospital.
the school services refused her as they said she was to Complex.

not that it’s the point but they’re is tons of really amazing pages on Etsy and instagram that do character converse with personalisation and they don’t cost the earth I know it won’t fix the root cause but might make her feel special

@fruitstick so sorry about your son X

I'm re-posting this to increase the chances of OP SEEING THAT FRUITSTICK KNOWS SOMEONE WHO PAINTS FOR SUPER SHOES

I thought the same but was afraid to suggest it! She would get cards from all over the UK and even across the pond.

we already contacted super shoes they said she wants eligible and then when I asked about using the people who paint the shoes they replied this

Do you have a local children’s hospice? I work at the adult one but our local children’s hospice would be able to help your daughter I think. They look after all kinds of illnesses and not just end of life care

Let her be angry. It’s shit having a life long condition. Some conditions do seem to be seen as worse/more deserving of fundraising etc. Especially anything with the word cancer.

Hello everyone

We always ask users to remember that not everyone on the internet is who they say they are – and remind folk not to give more to another poster, either financially (in cash or gifts) or emotionally (in time or care and support) than they'd be prepared to lose if things went wrong. Though, we strongly advise against parting with any cash or giving away your personal details.

OP you sound like the nicest person. Every post on here is thinking about everyone else. It's quite interesting you have had a unanimous response that your DD is being quite normal and understandable in her response here. It's an interesting thread as it's an issue you don't see raised a lot.

I'm not sure whether chasing the same things for your DD is the best approach as she will always be second in those, whether it takes a year down the line or whatever. The device sounds good and worth pursuing. Will she care so much about the shoes in some months or is it more a symbol in which case it might stay that symbol if she gets these things second after a long time and lots of effort? I wonder if she needs more acknowledgement from those around somehow and whether you could ask the school to do something for her. Even if it's just make a nice speech or something. Are there specific things that you could maybe organise for her? It might be they don't have to be so expensive. It sounds more like it's the sense of the outside world caring as much as the thing itself that upsets her.

Like others have said, I'd join in with her feelings maybe. Yes it isn't fair. She should be allowed to say it and feel it. As someone said, she probably has a lot of feelings pinned onto these symbolic things and it probably isn't just jealousy as such but all sorts of complicated feelings about being cared about, recognised, what she's going through, feeling part of things when she's out the loop a lot, being with her peers, whether she fits in and maybe some fear of the future. All these things. Maybe although it's very painful it might allow you to start letting her express some of that in a safe way?

In terms of explaining the situation, the simple explanation I suppose is that her condition is not known about and people don't know about it or understand it or how hard it is. Whereas cancer is a more common condition, sadly, and so people have more of an immediate understanding of what that means. So it is not at all about individuals, but about what people understand.

In terms of doing things that could make her feel special, is there anything you can organise that might help make her feel this? The shoes thing might be more fun if you could take her to paint them herself maybe or is there a way that maybe you and her closest friends could organise a party or event for her. Just because. Take her somewhere fun, or do some making of things together or whatever she enjoys? I know that's all cost, but it might be more the recognition and a bit of spoiling that is more important anyway, but sounds like involvement maybe from some of her friends or peers could be most helpful?

I haven’t accepted any offers of help so your safe :)

I think you are handling yourself with such grace OP that your daughter will actually be fine, because she has you as a role model.

Maybe she could (when the current fundraising excitement is over) do an assembly with you about her condition and the procedures she undergoes when she's not at school. Maybe even a video in the hospital? I think it would be good for her school mates to know this about her as well as see her as an example of bravery and fortitude. After all, many of them will need hospital procedures at some point and seeing her so calm about it can only help.