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 !

Honestly she is so kind, she usually just gets on with it - maybe that’s the issue. Maybe we should have realised well before the school situation !

The shoes sound cool, not surprising that she feels she has missed out. I am sure it not just the shoes, it’s the recognition of her struggle that they would bring 🤗

Have you applied to any of these OP?

https://www.togetherforshortlives.org.uk/get-support/supporting-you/family-resources/grants-and-wishes/

This just sums up how unfair some oncology charities are and fundraisers, why is it always for those who have cancer, why not for all life limiting conditions?
Theres a charity that advertises on FB for make up lessons for ladies with cancer to make them feel better, but not for ladies with other disease, ie MND, Parkinsons, Dementia, MS

Data protection is not needed in this instance imo so that sounds rather mean. Contact the company and explain your dilemma. They may be able to tell you who makes them or you never know, they may offer you a discount.

I have to say I am surprised at the lack of “ emotional support “ she receives. We have tried for many years.
the school has an art therapist come in which is not by then but the la I think. They as a school did set up a meeting with myself and the art therapist and then the art therapist spoke to her manager who said they couldn’t offer support - she was too complex -
then CAHMS accepted her refferal but she isn’t complex enough so has been on the waiting list forever.

@Mummyoflittledragon that’s what I did.
I explained that I understood she didn’t meet their eligibility criteria but could they possibly help me get in contact with who paints their shoes so that I could fund some.

As for the device, if this would make your dd’s life easier, you could perhaps start a go fund me. The school could put a piece about your dd in the newsletter and link the go fund me. I imagine this is sent electronically these days and even if they don’t give, it will raise awareness in the community. You could perhaps ask if you could share it on the local Facebook page.

Coming back to you saying you’ll be giving to this fundraiser. Tbh if you can’t afford something basic, which will help your dd to learn, I’d keep your money to save up for the device.

@widowtwankywashroom which is exactly why I say it isn’t a school issue - they reacted like the rest of the world reacts.
which is why making DD understand is easier than making the world understand.

@Mummyoflittledragon it’s not basic it costs thousands ! 😂

I would give to the fundraiser because otherwise she will stand out like a sore thumb as she would be the only one not with own clothes etc or what ever it is.

I meant contact the company that you have details of to ask them if they know who does it for the oncology patients.

Have you thought about starting a small charity for her condition? Its life long, and sounds like quite a battle and well deserving of a bit of community support. If it is rare, so what? It can be named after her. I'm with your daughter, this just seems unfair, I'd be upset too. Good luck with it all, sending extra hugs.

100% get it.
I wish we treated all life limiting conditions the same but as society we don't.
At least with cancer there are options, what is there for dementia, MND, MS nothing

You mean it’s come into school in your own clothes and give £1/£2? If that’s the case, then I can see why you’re giving the £1. But do be aware not everyone contributes even if they don’t wear their uniform that day. That would be discriminatory to those, who cannot afford to give.

I worked in paediatric cancer for years and now work with children with other life threatening/limiting health conditions. There is no doubt a mismatch in resources allocated (charities, Celebs who want to visit, staff members funded by charities). It’s not a cancer issue, they need the resources, it’s an everything else issue.

i wonder if you can only support your daughter by listening, empathising as sometimes that’s all you can do.

And also i don't think her reasons for jealousy are awful, I think they're reasonable reasons!

I get that the device with be expensive. People give money to go fund mes. Even to people just wanting to fund their holidays. It’s a case of raising the profile.

@widowtwankywashroom there will always unfortunately be a difference in allocated funds.
we accepted that along time ago.

I think I would feel like her! It's not fair but equally it's fair that children with cancer do get these things. Have you checked every charity? Could you and dd do some fundraising for your local hospital. Could she raise awareness for her condition? It might make local paper create a bit of well deserved fuss for her?

@Counciltelly thats exactly what I say - it’s not about taking those things away from them as they deserve them

it’s about giving other them to.

@autiebooklover there is no dispute that you are right and it is fair that they get them. I don’t think anyone would agree In removing charities for oncology patients.
but other children receiving the same level of support doesn’t mean stealing it from them. X

I'm another one who thinks your DD's feelings are totally justified. I feel upset on her behalf. I've been in a similar (not at all the same) situation to her and it really stung to see how much people cared about the suffering of someone with cancer (low level, not late stage, although still cancer) but my suffering didn't count. At all.

It's psychologically really hard to be in pain and know people don't care. It's actually something torturers use when torturing people.

I think you need to speak to the doctors and nurses about this. She deserves some psychological support. You seem at pains to point out how grateful you are to everybody. That's really nice. But please don't be afraid to tell them that alongside all their wonderful care, your daughter needs some specialist psychological care right now. It's totally normal. They will not think badly of her - or you.

She has such a difficult path, so hard many of us can't even imagine - and one that separates her from her peers, so is lonely.

Don't tell her she's wrong to have her feelings. She's not. Explain the facts but let her feel it's unfair if she does, because it is. She's totally right. And ask for extra help for her to come to terms with it.

@Notintheparentingbooks I'm so sorry you read it that way. That wasn't how I meant it. I was rationalising the unfairness of the situation. Because nobody is wrong here yet it's unfair on your dd. I'm sorry if I offended you.

That's so hard for your DD, she is quite right to feel it's unfair. It is unfair.

Are the shoes like these: https://kokoart.com/collections/all-shoes/products/abstract-hand-painted-shoes-1?

What kind of device does she need for school?

@autiebooklover sorry I wasn’t offended just wanted to make sure it wasn’t coming across that she doesn’t want them to have the shoes.