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 !

Your DD sounds amazing.

And people just don't get that "not knowing how long I have" because everyone always says no one is guaranteed tomorrow. But it's not the same.

I work with many children who were given the first 24 hours.

Many of whom have gone on and left us at 19 and continued to have the fullest life they can.

Does your DD have access to counselling or play therapy or something. It sounds like she needs support to address how she feels about her own condition.

Do you have a P.O. Box or Amazon wish list I would love to send your brave daughter a card and gift for all her bravery 🥰

Hi that’s lovely but honestly it’s okay - I think this has been really helpful for me to read and to understand that it’s ok ! X

My son has a life threatening heart condition, been through all kinds, spent months on end in hospital, and every time celebs visit or the football team turn up it's only ever to the cancer ward. I think when the word cancer is involved everyone's reactions are different. (I also have a close family member dealing with cancer, I'm certainly not dismissing it). But yeah sadly all the other kids fighting battles get overlooked.

My friends child has a rare heart condition and every year there is something like national heart day and everyone comes into school wearing red and donates to British heart. They use to do parties at nursery but what went alongside it was awareness of condition to children and parents.

If there a national day that could link to your daughter condition where they could do something similar and you could donate to make a wish? Or an org that is helping with research

I think I found it very hard to go to the school because as far as schools go ( it’s not her first ) they are great and especially the nee head teacher has been very nice to her when she is in school
they do tend to forget a little when she isn’t there 😂
I think that’s what she is finding confusing.

Can I also add, and this is not directed at OP or her daughter, but people in general.

Children don't 'recover' from cancer in the way that adults do.

People see their hair grow back and ring the bell at the hospital but there is a lot more to it.

Cancer drugs are designed for adults (there are hardly any developed specifically for children) so they have devastating effects on their bodies.

Most children I know who 'survived' still have huge health problems caused by organ damage, bone damage and are at high risk of developing different cancers.

Many of them also feel that everyone forgets about them once the excitement of their diagnosis and 'cure' has passed.

I mean she is really complex there isn’t really a name for it 🙈 we started of as respiratory and diaphragm …. Ended up in cardiac .. ended up on intestines …. We have just gone through a bit of a process that she probably doesn’t really fit anywhere.

It sounds like she has some unmet needs, around being recognised and supported with her illness, and about access to education/ her school community.

I wonder if https://beadsofcourageuk.org/ might be something that she could do, and then share at school?

I honestly get it. My son is very sick, he will be for the rest of his life. People say things like , well thank goodness it's not cancer and there is a part of you that wants to scream" if it was cancer he would have a chance of a cure". Another one is "well at least he won't need a transplant" again if only!

People just don't understand illness that's unusual or rare. Cancer is the thing every parent is told to fear but there is more out there

I spent so much time as a child in hospital (30 plus surgeries) that it became normal to everyone- not me as it was all painful and unnecessary but that's another story!! What I do remember is the searing envy if those children who were in for one operation getting lucozade, presents, attention and generally being the centre of everyone's lives, when I was just 'in for another one', so I really do understand your daughter's feelings - although a very different situation
It's hard for her I can see that. Maybe the best thing to do is explain that this poor child is suddenly ill and so everyone is sad, but it doesn't make it less sad for her? I don't know - it's a tricky one. I'm sorry

Hi op, I just wanted to say that you sound like a lovely parent and your dd's feelings are perfectly valid. I would focus on letting her know that she's not wrong to feel the way she does, it's perfectly normal and she's only human! It's also entirely age appropriate.

How would your dd feel about doing something to raise money for and awareness of her condition? Not in a competitive way - she could do it away from/ outside of school. She may not want the attention, but the most important thing is to keep the conversation going with her and reassuring her that her feelings are valid - and normal - while gently explaining that all the treatment and hospital attendance and clinical considerations will be painfully 'new' to the other child.

Thanks for making me feel more normal with these thoughts.

I'm not blaming the school. But they have been rather insensitive. Children need support for all sorts of things. It's not top trumps.

I think the school should have noticed before now that the communication device would be a real benefit to your child.

I'm sorry for your child (and you) that they are ill and suffering and I'm extra sorry that that have discovered that there is fairly fairness in any area of life.

@BBQchickensalad it's hard isn't it as you can't say it in real life without sounding like you lack compassion. When that could not be further from the truth

The robot was not their fault it is finder for the oncology patients from the hospital charity. It didn’t seem they knew anything about it prior.
the problem was for some reason it was announced ( they are diff classes ) so she didn’t really need to know. There was much excitement over it.
at the time DD did not know the school didn’t help get it.
the school are now supporting us in trying to get one but the likelihood is slim.

If it's a no isolation robot, quite a few local authorities have signed up to that scheme and have several robots available?

You can check whether your LA is one of them here I think
https://www.noisolation.com/av1/local-authorities

She wants to be an acknowledged. For her suffering and pain to be recognised and acknowledged.

Allow her feelings, and give her space to express them, however ugly they may appear. She has them, and she needs to express them. She needs to be heard, and listened to. I really wouldn’t tell her she’s wrong, or explain how the school are actually lovely for X, Y, and Z reasons - just listen to her. This is something she has to work through and process, and that’s a very individual experience. She needs your support, and telling her she’s wrong, or she’s right ‘but…’ could result in her feeling even more isolated and resentful.

@Maluki our LA don’t :( I had to tell them what one was 😂

We accessed the AV1 for a child in school who has long term health issues and in and out of hospital (not cancer) so it can be done. Helped enormously with well-being.

Your DD is right. It is really unfair that what she's going through isn't getting acknowledged and that she can't access the same supports. It's hard to rationalise as an adult in this situation let alone a child. It can feel like no one cares. Sorry if you've already said, im in a bad patch and concentration isn't great, but I would tell her her feeling are understandable and that's it's ok to feel that way. I would try to explain in an age appropriate way how things get normalised when someone's been sick for a long time, but also that it's not fair on that person when what they're going through fades into the background. I understand what you're worried about if she says this to others, but I think the most important thing here is that she feels heard and supported.

I actually don't think the school are doing enough here. They should be acknowledging what your DD is going through in some way. The school can't make the resources appear that aren't available, that is a societal problem, but they could help your DD feel her struggles are acknowledged and matter. My DC school had a boy with a rare condition, the school did a fundraiser which included the principal speaking about his condition at assembly. They didn't specifically say who the child was, it wasn't directly about him, but it raised awareness about what he was going through. It acknowledged what he was going through is so so hard.

My DS has made cards for a classmate in hospital, they've also sent a 30 second class video of everyone saying hi. If your DD was in one of my kids classes I'd want them to do something to show her that what she's going through matters too. That's what it comes down to I think, the school is acknowledging what this other child is going through and they should of course, but your daughter deserves that acknowledgement too.

Hi OP. Like others have says I totally understand where your DD is coming from. I had various childhood illnesses - some still with me but not life limiting - and had various hospital visits (nothing like as much as your DD) until I was a teen. I still sometimes feel frustrated when I see kids being made a fuss of for being ‘brave’ - I just had to get on with it! (I’m now in my 40s). So as others said let her have her sense of unfairness and even jealousy but work with her on those feelings. A charity for my condition wasn’t set up until I was late primary / in my teens but I think the newsletter / community then really helped my mother. However I always felt shame about my hospital visits and that I shouldn’t talk about them, and I’ve had therapy since having my own child to work through that. There was also a sense from my mother that I just had to suck it up and accept my scars and managing it all when other (healthier) kids didn’t have to (she’ll disagree I’m sure, and now I’m a mum I know she was doing her best and she has said ‘that’s just how things were’ in the 80s).

I actually think you’re being too nice and forgiving to the school and LA - I totally get where you’re coming from but your DD is entitled to help and not being forgotten about. Yes, life is like that but can it not also be a lesson for her on if it doesn’t feel right and is unfair then there are things to do to change that? You sound like you advocate for her amazingly so could you sit down with her and explain that yes it is unfair but you don’t have to accept that and what can you do together to make it better?

Please give her a virtual hug from me and tell her how brilliant she is.

I think your daughter sounds truly amazing and her feelings are very much justified.

I agree with others- can the school do some other fundraising event for her hospital wards/care team after a respectable interval so it doesn't look like it's been sparked by child 2's fundraiser?

Is there a charity out there that covers the "so rare it doesn't have its own cause" category? Would your daughter even be eligible for an award of some kind (they used to have the child of achievement awards) to celebrate how well she's done to cope with mainstream education in and around all the medical visits etc- it sounds as though she well and truly deserves recognition for everything she's done and been through.

Hope the offers on here for help with accessing the shoes get you somewhere too!!

Hello OP. Just wanted to pop on and say how reasonable I think your DD is being - these aren’t terrible thoughts or ones she should feel ashamed of at all, they are perfectly natural and logical and I can understand her feeling left out. And I say that as mum to a little girl who has (so far) survived cancer. My daughter also sometimes comments that it’s not fair on some of the other children she’s met.
also @fruitstick is totally right - four years on and my daughter has now has three operations to try to correct the effects of her cancer treatment and she’ll be on lifelong medication too - it really doesn’t stop when the hair grows back. And a huge thank you to @fruitstick for posting - I am so very very sorry you lost your child. No parent should go through that.

Gosh OP I’d be fuming if I was your daughter and I’m a bit surprised you’re not.

I know you say the school has just reacted the way the world does, but the difference is, most of the world isn’t very aware of conditions like your DD’s (unlike cancer) whereas the school certainly is aware!

Fundraising days and shoes are hurtful enough but things like the device for the other child to attend virtually really really matter - your DD should absolutely have the same. Who is this organised by?