Hi everyone,
JaneRA - agree entirely with what you say about needing someone to ‘pick up the ideas explored here and run with them…fast’ - anyone out there willing to put their name forward to start the ball rolling??
Kay123 - again, I think you are right with your 3 steps but I think there is also a 4th step that could be explored - the future without a mum (wow it really hits home there - sorry).
For example, I was listening to a radio show a couple of months ago now and the DJ was talking about how in one school in England they were not going to celebrate Mother’s Day by making cards with the children etc. The DJ was very scathing along the lines of …‘another thing they are trying to ban and it isn’t on really…’ etc. I just burst into tears listening because I thought how insensitive he was - was he so lucky to have his mum around, a mum who wasn’t ill? Does he not realize that there are children out there who don’t have a mum? How would my children cope at school when all the other children were making Mother’s Day cards etc?
Pinkdove - I think your son is dealing with this so well, maybe both you and your son could contribute because your son seems to be dealing with it in a way I would like my children to deal with it. The same applies to you Kay123 and your son.
Coping techniques - I just wanted to add my thoughts (for what they are worth), speaking for myself and not anyone else - I have memory boxes containing things from my little girl who died. When those tears flow I actually cannot cope with touching/smelling any of her clothes, things she made, even looking at her photograph, it seems to make my grief worse - what actually helps me is a verse sent to me by the oncology school teacher at the hospital - I read it and somehow it gives me strength. When my time comes I will want to make sure I have made up memory boxes for my children but I will also want them to have a coping strategy. Trouble is, we all have different ways of dealing and coping with things - any ideas?
If this resource book/pack does get underway, would there be scope do you think for it to cover children of all ages but also be a book to dip in and out of (that sounds really clumsy - sorry) because (hopefully) our children will grow up and their understanding will change as they grow.
Love to you all. xxxx
I have decided to make up my own memory journal for my children to fill in (I like scrapbooking and that kind of stuff so have loads of bits I can use). I have typed up a list of questions to go in based on many of those in ‘Dear Mum’ type of book. In order to get your children to think about YOU and write down their memories of YOU, can you think of any questions that would be good to include? I have got lots along the lines of ‘what do you like about Mummy’ ‘What makes you cross with your mummy’ ‘Describe Mummy’ draw a picture of Mummy (and daddy, of course). I thought I could leave space for them to add more memories over the years. What I want to do here is get them catalogue their own memories, instead of me doing it all for them and possibly colouring their judgement. I would like them to be able to revisit their own interpretation of how things were and I would like them to be able to write of the good and bad things. ‘Mummy is always telling me off, mummy is always confiscating my Nintendo, she never lets me stay up late enough… I hate you more than poo’ (yes, my daughter said this to me once!)
Jenny
P.S. I know she loves me really.
Hi Kay
How are you?? Seems ages since we met although I suppose it’s not that long ago!
I can relate to a lot of these posts as it’s been 13 years of living with b.c. in one form or another and I get the feeling that we all do what is right for us and our family in what we leave behind.
I’ve done a long letter, which is more like a diary I suppose on the computer. I added to it recently and was quite surprised that the last time I’d put anything in it was September 2006 when I was really ill. I still feel emotional when I update it as I don’t really want there ever to come a time when my son is going to have to read it! I’ve started with a history of his grandparents, what their names were, dates of birth etc as he never knew his grandmothers, has a bit of a memory of his paternal grandfather and my dad lives in South America.
How’s work been?? (or more appropriately HR!?)
Carol
x
Hi all
It does seem ages since we met, Carol, but (I think) you are hoping to go to Dawn’s on the 19th so hopefully we can catch up then! Had a meeting this pm with the pensions advisor so your comment re HR was very pertinent. Still going well actually because the temporary HR advisor is still in post. Back to my full hours now but doing what I can from home and getting a lot of support from all (or most as I still have a problem with one particular colleague).
Sorry - way off topic! Really liked your idea Jenny - how about questions about what they like doing best with you? What they don’t like doing with you? What meals you cook that they like best? What their favourite holiday/outing with you has been? When do you make them laugh? What’s their favourite thing that you wear? (or have you covered all those in the category of “what you like about mummy”).
I want to write letters but I can’t somehow get started. I think I still tend to assume that I will have lots of warning and can then do these things - and then panic that I won’t or won’t be well enough then to do them. It’s so difficult isn’t it?
K x
Hi everyone,
This is an incredibly difficult topic and I do think there should be more information on this. I am a psychologist and I want to reassure people that all the evidence shows that children whose parents die do much much better in terms of long-term emotional well-being than children whose parents divorce acrimoniously, if they have a stable set-up after the parent has died - so if they have someone else to love them and care for them and show them unconditonal love and support they will be fine - even if they have lost a parent they love dearly. What is much harder for children is arguments, fighting, and most of all uncertainty. If children know that mummy has gone and is not coming back they can work though it and come out the other side happy and healthy and well. So it’s important to give children stability, explain that after you go there is someone else (whoever that is) that will love them like they are loved now and so on - and of course prepare them for that life by lots of contact with that person (if it’s not your husband/partner/grandparent who they see regularly anyway). Of course they will be upset initially but it doesn’t mean that they won’t live extremely happy lives, which is all we want for our children after all. I think the fear that the disease will ruin the lives of our children is the hardest thing, but it doesn’t have to be that way.
Svenska.xxxxxxx
Hi all
Have just re read all the posts as I am speaking to children tonight. We got a phone call from the school yesterday to say my 11 year old daughter had left school without permission to go to shop with another child who the school described as a very bad influence. This was totally out of character and I was devastated, its so classic of child having problems at home going off rails in school. For the past 2 weeks I have been going for brain rads while they are at school and trying to pretend all was fine, waiting for right moment to tell them. I have know decided right moment does not exist and honesty is best policy. Re reading this thread has really helped thanks for all the continuing support. I have arranged for bc nurse to come here tomorrow and will keep kids off school if they want to speak to her. Also we are running/ walking on Sunday for charity (Marina Dagleish and hospice). This has been arranged for a while. Went into both schools this morning to fully explain situation have been in before but felt update was needed. Also keeping them off Friday for retail therapy (I know it helps me) and a meal hoping I’m doing right thing will try to strike a balance between helping them understand without frightening them.
Take care Liz x
Take Care
Hi Liz
Just wanted to say that I hope all goes well tonight when you speak to the children. It will definitely be hard but think you are doing absolutely the right thing. It is a very different situation but I work with children with special needs and sometimes have to speak to parents about speaking to their children about the thing that is worrying them rather than avoiding the topic, as they don’t want to upset them. Often the children are very aware that something is wrong and actually not talking about it, makes it even worse - it becomes something so awful in their minds that no-one can even talk about it. And children often imagine and fear the very worst but may not want to express it in case they upset you- so talking openly may help a lot and actually allay some of their fears. It’s a matter really of giving them a chance to talk and listening to what they are thinking/imagining, as much as giving them information - following their lead really.
Sounds as if you’ve got it all thought through brilliantly though - the idea of the bc nurse coming is great. And missing school then and on Friday isn’t going to do them any harm - think about how much they will gain from feeling more settled about this and therefore more able to concentrate and progress at school in due time.
Let us know how you get on.
Kay xx
Hi Liz,
What a great attitude you have. I hope that I will, like you, realise when the time is right to really talk to my children. You have put a great deal of care and thought into this terribly delicate issue. I will be thinking of you and yours today, and may have to join you in the retail therapy part - purely in the interest of solidarity you understand…
Love Jenny
x
Hi Jenny
I spoke to oldest son first and in the middle of it when he got upset I wished I had not started but by end of evening I felt so releived and slept for the first time since dx of brain met. Older 2 were able to start joking about it asking what I’d left them in will! We all found it hard but I asked if they were glad I was totally honest and they said yes. Also feel they can now ask me any questions they have openly and I also asked them if there was anything in particular they like to do with me (within reason- no parachute jumps etc)
Take care Liz x
Wow Liz,
I am inspired by your post. I guess once you break through that first barrier - and obviously there will be tears and upset - it opens the floodgates and you can all move forward in the knowledge that you are all sharing in this difficult family situation. I am sure your kids must feel so much better knowing they do not have to skirt around the subject and can talk to you about it. It must feel as though a huge weight is lifted. So glad you managed to sleep. Dark thoughts in the early hours are horrific.
Feel quite teary now, so lets go shopping!!!
Jenny
x
Hi Jenny
Leaving here in about half hour to shop til we drop (husband wont know whats hit him)
Take care Liz x
We’ve always been honest with our son because when my mum was dying from breast cancer my dad didn’t tell either me or my brother (I was 26 and he was 20 when she died).
It took my brother years to come to terms with this (she died on his stag night) and the guilt he felt. My dad thought he was doing it to protect us but he didn’t and I think that’s what decided us to tell our son the truth (which has been appropriate for his age since he was 7 when I was first diagnosed through to now when he’s 20).
He still doesn’t start a conversation with me about it but he said he wants to know the results of any scans, genetic testing, etc and I’m aware the reason he doesn’t really want to talk about it is because he wants me to be well.
Hi Liz
left a post wishing you luck on the other thread I am so glad it went as well as these things can.
My husband died 22 years ago our daughter was 2 when he got cancer and 4 when he died. We were very honest from day 1. If she asked a question we gave her an honest answer some of the questions made us laugh and some made us cry. Eg “will mummy find a new father christmas”
The night he died Donna -Marie had fallen asleep while he read to her. It was just gone midnight and she woke up and said the angels were coming for him and he would be better. He laughed and said "“maybe tomorrow I dont think I am ready just yet” she gave him a cute look kissed him goodnight God bless and went back to sleep.
Three hours later he had trouble breathing thanked me for looking after him and loving him. Then he was gone.
D-M woke up and said “I told you they would come tonight”
The following weeks, months, years for me were hell but D-M coped and we kept him alive by always talking about him. I am now married to Ian (4 yrs tomorrow) in August 2006 D-M married James and just before Ian and I walked her down the isle she said “I love you both, but if I cuold have daddy back for 1 hour this would be the one”
Hope this doesnt upset anyone.
Love Debsxxx
Hi Liz
Glad that this went OK (what a stupid word to describe this…but I think you know what I mean)
Debs - you didnt upset me - but you did make me cry a bit…
Thank you everyone for your honesty here
Love
Cathy
Hi Liz
So glad to hear that it worked out well for you and your children - brilliant that you felt relieved and better able to sleep.
Hope the retail therapy worked as well!
Kay x
Hi Debs
Your story made me but didn’t upset me I feel honoured that people we only know through cyber space are willing to share their most personel experiences with each other to offer support and I think I would have gone mad without this. Thanks again to all. Shopping was great my daughters got amongst other things some lovely summer dresses and they look so beautiful in them. The 2 girls and husband took part in a fun run on Sunday (cancer charities) 1 daughter dressed as a funky fairy and the other wore one of her new dresses, matching jacket, little gold pumps, bag etc just because she couldn’t wait to wear her new stuff, and said if anyone asks she’d say she’d come as a WAG! (she’s only 9) God Help husband when she’s 19!
Take Care
Liz x
Been away on hols so only just catching up with posts.
Came across an article yesterday in the Liverpool Echo celebrating 60 years since the formation of Marie Curie Cancer Care in particular how the charity works with children. The headline ‘Notes to Mum Help Grieving Kids Cope’. Every time this topic comes up it means tears are never far away but I was pleased that awareness is being raised about this desperate situation that some families find themselves in. Take care everyone. Love xxx