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 !

@bohemianmullet your right - it isn’t raised a lot because either

1. People don’t realise unless they are in the situation
2. people in the situation are worried about offending.

thank you for your message
I think it has been interesting to read and to realise that maybe it’s all okay

Infuriating!

So many kids fall into these black holes between support services, it’s so frustrating.

I am so very sorry for the loss of your son. I cannot even imagine but please know my heart goes out to you.

You have every right to feel every way you do, whether that be grief, jealousy or anger. What you have had to go through is every parent's nightmare and no one can ever understand your journey.

You are an angel to reach out to another mom who is going through something difficult and heart-breaking with their child. Kids with rare (orphan) diseases frequently get looked over because the disease is not understood, therefore not relatable to some.

Finding ways for your daughter to feel acknowledged and supported seems really important. I hope you can get funding for one of those robots - I would imagine that could be even more important when she goes to secondary school, starting using one by year 6 would allow you to work out what works and what doesn't and make an effective transition plan with her next school.

There is a "rare diseases day" - looks like the last one was in February so it could be good timing for your daughter to look into doing "something" around the next one. Rare Disease Day 2023 - Rare Disease UK
Looking at this, the focus is on genetic conditions, and I guess I am assuming that your daughter most likely has some underlying genetic issue to her problems (whether identified or not) - apologies if that is not thought to be the case.

How is she at writing? I'd encourage her to start writing (or dictating or drawing) about "her story" - in the absence of therapy support that could still be a powerful route to expressing and validating her emotions.

I hope that you yourself have enough support too; and that this thread has provided you with some very necessary validation as well!

Your daughter is a warrior! Yea! She reminds me of the Katy Perry song, Roar.

I'm so sorry to read about your daughters struggles OP and all the other posters with sick children or those who suffered childhood illnesses.

This reminded me of someone I know whose child has a really rare syndrome, like 2 other known cases worldwide. She says how jealous her DD and her feel of the Downs Syndrome children and parents with all their charity organisations and days out. I remember thinking it was one of the saddest things, that the bar was so low and the rest of us go around moaning about homework or the cost of shoes, horribly oblivious. That kid and your DD deserve to be part of a community with support, it must be so isolating. Wishing you well OP

That reply is a bit shit from Supershoes to be honest, what are you supposed to do? A shout out on here for anybody that paints shoes? I have seen stuff sold on ebay, might be worth a look. That robot looks amazing, not cheap though 😟

I'm not sure this is a good plan as the funds would be in different pots so can't be moved around. And it might undermine your argument if you say that she doesn't need the transport to school.

If the LA doesn't approve the robot could you then ask the school to fundraise for it? Although I accept that carries a risk if it's not successful that your DD then feels even worse.

And you can add me to the list feeling angry on behalf of your daughter. The school have effectively sent a message that a healthy child who becomes ill has more value than a child chronically ill. And schools should know better.

Just a quick thank you for everyone’s comments. I am going to take her out this weekend and sit down afterwards and talk to her properly about everything.
I just hope I don’t screw this up x

A school fundraiser for the equipment is a great idea. Our school's PSA would be really keen on supporting something like that, and it has the added value of making her feel everyone is interested in her too.