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Bereavement

Find bereavement help and support from other Mumsnetters. See also your choices after baby loss.

My baby is terminally ill

28 replies

Butterfly3333 · 27/03/2021 13:32

Hi everyone,

My youngest child is terminally ill. My other two kids are aged (8) and (6). I want to think of ideas for things they can have that will be special for them to keep forever. Does anyone have any ideas? Thank you

OP posts:
marabond · 27/03/2021 13:37

I'm don't really have any ideas OP but wanted to express my condolences Flowers

Cattitudes · 27/03/2021 13:40

Flowers so sorry to hear that. Would a special Christmas decoration each be something they might like, they can put it on the tree each year and have a little reflection but it is not something that is there all the time. Children do move on from death often much faster than adults so do not be too surprised if they quickly seem to be getting on with their lives than you are able to.

AlohaMolly · 27/03/2021 13:42

I’m so, so sorry to hear that OP. I can’t imagine how you all must be feeling.

I’m sure you already do, but lots and lots of photos. Your older children are at an age where they can form lasting memories of your youngest, so if you’re able and if it’s suitable, could you do things like sleepovers in the living room, picnics in the park etc. Lots of photos and a physical photo album.

What about some sort of artwork? Hand prints? They were all over Pinterest when DS4 was little - rainbow colours or different shades of the same colour and the biggest hand print goes first, starting with the adults. Wait for it to dry, then the next in size, then the next, then the next.

Family singing? You don’t say the age of your youngest, but if they are old enough to sing songs or even babble along, could you record yourselves singing favourite songs so you have an audio record of you all together?

LaTomatina · 27/03/2021 13:42

OP I am so sorry to hear this.

A print of all 3 siblings handprints together, framed. A professional photo of the 3 of them together.

happytoday73 · 27/03/2021 13:45

Christmas decoration is a lovely idea... Memory box each filled with photos of them and your youngest so they can look at when like. Dependent on how old your youngest is.. Piece of art work?

I am so sorry you are having to think about this 💐

AlohaMolly · 27/03/2021 13:46

Also, age dependent, what about making decorations together for the annual things that you celebrate. Christmas, Easter, Valentine’s Day etc. So every year you can pull out the decoration that your youngest made.

Cornishmumofone · 27/03/2021 13:48

Are you able to make a video of them together? Is your youngest child able to talk? Could you get a voice recording and put it in a special toy for each of them?

lifejusthappens · 27/03/2021 13:50

Hi OP,

Firstly, I am so sorry. I’ve not been through this, but my mum has, and it feels impossible to get through. She did though, 20+ years later and she’s still here and has way more good days then bad, though it has shaped her in many ways.

My brother died when he was 2 days old. I was only 2, so I don’t remember it but my siblings were aged between 5-12 and were more aware. He had come home and passed away very suddenly and very unexpectedly a couple of days later. All of my older siblings had counselling, even the 5 year old spoke to someone. The older 2 understood, as much as they could, us younger 3 didn’t. But kids are good at getting on with their lives, as mentioned above, they sort of just took it in their stride. Not to say there wasn’t some hard moments, but they all got through it.

Again as mentioned above, we all made Christmas decorations in his honour that came out every year.

These weren’t a thing back then, but you can get those fingerprint necklaces etc now that could be a nice idea. Framed photos for their rooms, perhaps.

I’m so sorry, again Flowers

Fuppy · 27/03/2021 13:51

I'm sorry this is happening to you OP. I've suffered a neonatal loss, it was then I saw that you can have bears made out of old clothes/fabric. I think a few places do them but here's one...

https://www.memorybears.co.uk

Thanks
bloodywhitecat · 27/03/2021 13:51

I am so sorry to hear about your baby, is your children's hospice involved? They can be a good source for memory making activities for the whole family. The Butterfly Wishes Network are a charity who work with local photographers to take some stunning professional portraits.

RB68 · 27/03/2021 14:30

How about teddies from baby clothes?

ElderMillennial · 27/03/2021 14:35

I'm really sorry OP. I don't know how much time you have had with your baby. I lost a baby, a bit different as my baby was born sleeping but I really cherish the memories we have. I have a lock of hair, hand and foot prints, photographs. A charity called Remember My Baby came to the hospital and took photos. You could take some photos as a family. Pick out a cuddly toy and then get an extra one or a couple for the youngest. I hadn't bought any cuddly toys so I picked something out and bought two so we could bury one with her and keep one but you could keep one with the baby for now and give the others to the other children. You can get memory bears and some are made with your baby's clothes. Maybe think about who can be there to spend time with you all together or to see the baby (if Covid permits). Flowers

crimsonclover · 27/03/2021 14:47

As well as hand/foot prints there are some lovely moulds that can be made to frame. I’ve seen some where a child’s hand is being held in another’s hand. There’s also a beautiful book called ‘Wherever you are:My love will find you’. 💐

Itsjustaride8w737 · 27/03/2021 14:58

I'm so sorry op, how old is the youngest if you don't mind me asking?

Some great suggestions, what about one of them personalised story books, you could have all 3 children in it.

IJustLikeBiscuitsOK · 27/03/2021 15:01

We didn't lose my sister, but she was on a transplant list when I was 7 and we nearly did, multiple times. We are now losing her 15 year later now and it's just as difficult so I am sending you such love and strength. When we thought we were going to lose her as a child with me as a child too, we planted a tree whilst she was still here, Emma's tree it will always be known as. We had a party for her birthday and took lots of photos. Hand prints. Mum got us matching bracelets etc. Speak to the palliative care nurses, they have LOTS of great ideas. Children's hospices (if it comes to that) are amazing places, not depressing and they always think of memory making ideas. I'm sorry if this isn't much help, it's such a hard situation. But please speak to the nurses, they are good at this stuff.

IJustLikeBiscuitsOK · 27/03/2021 15:02

Also, ask your children. My mam asked me and I said a tree, I never knew she was dying but I knew she was very sick and making nice memories were important, my mam asked the nurses how to talk to me in an age appropriate way.

AvaCallanach · 27/03/2021 15:13

If you can record him or her babbling or cooing or talking, these people can make it into a little song:
www.auraskymusic.com/product/babblesong/

So sorry to hear about your situation. I can't imagine.

Frequency · 27/03/2021 15:18

How old is the youngest?

You can get voice boxes which you can record onto to sew into teddies.

I'm so sorry for what you're what you're facing.

bluebluezoo · 27/03/2021 15:32

Children do move on from death often much faster than adults so do not be too surprised if they quickly seem to be getting on with their lives than you are able to

I disagree. Children often take their cues from adults, so will often not want to bring up a loss for fear of upsetting people. For example I heard the above many times after our loss, so I felt I should be back to normal so learned to hide my feelings very quickly. I also felt I should be supporting the adults, even as a young child.

From my own experience it comes in waves. There’s the initial upheaval and upset, but while you do get back to normal fairly quickly, it hits you at random times, but by then everything is “normal” so you don’t feel you can bring it up again and remind everyone...

Also the one thing I felt is everyone went back to normal so quickly, when my life had been turned upside down. Barely anyone acknowledged my loss, again I think for fear of having to deal with tears and upset. I wanted to tell everyone, yet I didn’t as I couldn’t stand that silence where people just didn’t know what to do and quickly changed the subject.

I would recommend counselling, or a bereavement group, anywhere they can talk about it. It may hit them months or even years later. They may not want to talk to you for fear of causing upset.

Sudden loss as a child is bigger than adults realise. There’s the realisation of mortality, the constant fear that someone may go out, go to sleep, go to the dr and die, and you’ll never see them again. I still constantly worry. It’s left me with fairly major attachment issues.

I think there’s a few childrens bereavement charities, winstons wish? Get the help. Get help long term.

2bazookas · 27/03/2021 15:52

I suggest you contact the nearest childrens hospice. They can offer a great deal of support , not just to your sick child but their siblings and you. They have specialists in what you're seeking.

I am so sorry you are facing this.

butterfly990 · 27/03/2021 16:02

There is a group called compassionate friends.

www.tcf.org.uk/

I remember a friend telling me that they supported a child and their family who was terminally ill. It is helpful to be in contact with and make friends with people who have gone through similar experiences to yourself.

Sending hugs xx

Butterfly3333 · 27/03/2021 17:33

Hi everyone,

Thank you so much for all your lovely comments. My youngest is 22 months and does not have the ability to speak. His disease has took his ability to eat, move and smile away from him! His big brother and sister are so amazing and understanding I want to do as much special things as I can while we have time. We do not know when my son will pass what we do know is that he will not live past 5. We are involved with Pallative care but not yet been able to go visit hospice due to Covid!

OP posts:
Butterfly3333 · 27/03/2021 17:36

Thank you for your comment. Sorry for your loss! This is my biggest worry for my kids and my partner (their dad) lost his sibling when he was 5. I have seen the affects this can have positive and negative but I worry for them. Staff from hospice were in their school basically making sure they were okay one day for 6 weeks. She reported back to me that she felt they were coping good and were very honest and understanding and know that they can come to mum and dad with anything. I wish I could change it all! The long lasting affects scare me.

OP posts:
Butterfly3333 · 27/03/2021 17:40

Sorry about your sister @IJustLikeBiscuitsOK gosh that’s hard! It’s so strange it’s as if when something bad happens your opened up to a world where you notice everyone’s pain so much clearer. We are hoping to visit hospice once it all opens up again. Where did you plant the tree? We also like this idea and would be more special while my son is here, thanks for your advice it means a lot :) you sound like a strong positive person! Xx

OP posts:
Butterfly3333 · 27/03/2021 17:42

@ElderMillennial thank you for your advice! Sorry for your loss it’s heartbreaking regardless of what age your child is. As a mother it’s something you don’t ever want to be faced with as you know! I have got someone coming out to do moulds of the 3 kids hands and in a special frame been cancelled twice now due to Covid! Hoping this can get done in April. Xx

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