How do I help DS deal with my possible death, he's 3.9
joycetheripper · 05/04/2010 19:30
I've been sick for a loooooong time main problem being really very serious daily migraines.
I've had millions of other symptoms that have recently got worse like a thorn under my right eye and the right side of my face being numb and pins and needles in my arms etc but I'm knackered & dont really feel like listign it all out here.
anyway eventually after it all getting much worse I had an MRI & they found englarged blood vessels & indications of AVM or anuerysm on the right side of my head so I just had a 2nd contrast MRI on Thurs to get more information. I know if it is one of those things they can operate to remove them before they burst which will sort me out really but frankly I'm scared shitless, especially after today when we were all out and I have barely left my bed this last few days because I find it so hard to stay awake but I made the effort to go down the road to a pizza place and then on the walk home I passed out crossing the road, although it felt to me that I just fell asleep for a minute. DS was screaming and crying and relaly upset that I fell down.
DS and I are extremely close, he has got used to me spending a lot of time in bed but we are really physically affectionate and I am a major softening influence in his life. He really depends on me for so much love. Although I must admit I wish I were dead most of the time now, because of the pain I'm in, I am desperate to hang on and protect him.
Either way can you help me to help him deal with this, in case I die. I dont want to leave him without me covering him up somehow.
wrinklyraisin · 05/04/2010 19:38
Oh how very sad... and scary for you too. I wish I had something wise and comforting to say. I can only offer hugs and say just be honest and loving and calmly explain (if you can) that you are very poorly, but the Drs will do everything they can to try and help make you better, but if they cannot "mend" you, you will go up to the sky and become a star (or whatever conceptual imagery you want to use about death). I think there are a few books out there (Wilson's Wish?) that talk about death and bereavement in a way that children can "get"... I think it's important to emphasise your potential recovery more than your potential passing from this condition IYSWIM? Is dying a thing the Drs have said is a likely prospect? What a horrendous thing to be going through, I am so sorry (((hugs))) again.
gherkinwithapurplemerkin · 05/04/2010 19:39
Jeez this sounds awful. No real advice but couldn't read and not post. Hope you get the treatment you sorely need v soon.
To help you feel you have got ready for the worst outcome, could you begin a memory box for ds? Photos, writings about things you did together etc. Hopefully it will never be needed but it might make you feel a bit eaiser in the meantime.
Fliight · 05/04/2010 19:40
Joyce this is a very painful situation for you in more ways than one.
Does your Ds have other adults he is close with? That's the first thing to look at.
joycetheripper · 05/04/2010 19:41
I havent been told I might die, no. I havent seen the consultant just MRI people, though I am seeing him tomorrow. I just know what these conditions can mean and I know how my own symptoms are progressing. I know its not even remotely certain but its feeling very much like a contender so I'm just trying to think of it while I'm awake.
joycetheripper · 05/04/2010 19:43
my DH, his dad, they are very close, and lots of Auntie's and Uncles. Just no one like me. I keep trying to audition people in my mind to see if he could snuggle them but he just couldnt relax with any of them as he needs to.
FabIsGettingThere · 05/04/2010 19:43
You don't mention a daddy, is he around?
What about making a photo scrapbook of days out you have had/do have in the future and then you can look at it together and build more memories. Is a lovely thing to do even if you are not facing a big illness.
I have a friend whose wife is ill and may well die leaving a child under 10 and it is so unfair.
I wish you all the luck in the world.
Fliight · 05/04/2010 19:45
I know that children benefit from having other stable influences in their lives, when they are losing a parent. This can very much help to make the transition easier...basically that everything else stays as far as possible the same, for them, so that they are only losing one (albeit huge) influence if they do lose that parent.
So really ensuring that he has others close by as much as possible, helping you both, being with you together, interacting with you and him at the same time, not taking him away from you all the time - but being included in the relationship, or just in the room while you and ds interact.
He will need witnesses to the relationship, people who can reassure him it wasn't his fault, who can remind him of you and whom he can rely on.
This is all if you don't make it, and I sincerely hope you do because nothing and no one can ever replace you for him.
joycetheripper · 05/04/2010 19:47
yes sorry his dad is very around. I just want him to have a mother he really needs one. he's one of these boys who looks like marlon brando and communicates in kitty purrs. I'm worried for him.
activate · 05/04/2010 19:50
I have personal experience of this. You need to find a good person to talk to, normally a counsellor. THe problem with neurologists is that they do not consider the whole person so the stresses and strains a potential life-limiting disease can put you under is not accomodated within the NHS. So step 1 find a counsellor, a good one that you relate to
Step 2 which is difficult and you have to be at the right stage in your acceptance is to get your affairs in order so that you know that should the worst the happen the minimal pain will be caused by things other than grief. This includes finances, gaurdianship and funeral planning (sorry if you're not ready for this bit yet)
Step 3 - write down your memories - things you remember about being a child, about being a parent - anything and everything - write it out with emotions and thoughts and lodge it with a trusted person so that your children will always have access to you, what made you - if your parents and siblings are around get them to write / input too - you can buy pre-done books for this but you can also download guidelines from the internet that help you work through it
Get on to Winstons Wish - they have some excllent avice of things to do with your children such as memory pots etc
I'm sorry you're going through this I know exactly how difficult this is - but know you can do this - and there is good prognosies too
But do not lose the present in despair for the future
(PS I am not alwasys this sane about it by the way - it is a good time at the moment)
Fliight · 05/04/2010 19:52
I can understand that.
I'm not certain what to suggest, although it crossed my mind that you might want to look at something physical for him rather than another person, as it were, to take your place - i am thinking a toy, a blanket, maybe he already has one - that you could tell him was specially to do with you...that sounds so trite but he may not need a replacement you, actually. He may be able to retain a sense of you and anyone trying to substitute you would get in the way of that.
I'm not sure.
I am just very sorry you are facing this scenario. I hope that they are able to give you more hope when you see the consultant.
greensnail · 05/04/2010 19:53
Try having a look at the winston's wish website, there's some really useful information there. It might be worth contacting your local hospice to as they will be able to tell you if there's any local children's bereavement services which would be relevant to you.
Really hope you get some positive news from your consultant tomorrow and that there's some treatment available for you.
joycetheripper · 05/04/2010 19:54
I keep crying. He's coming in to my bed to watch a dvd with me now and I'm trying not to cry. UUUGGG. Gotta go for a while Percy the Park Keeper.
CheeryCherry · 05/04/2010 19:55
Gosh what a dreadful and very sad issue to be considering...but I understand you're anxious to think of all your options. Firstly, chances are that with an op you will make a good recovery. But if you feel you need to prepare for the worst, I agree with the suggestions of a memory box - telling him its his baby box, and fill it with favourite things - games, picture, photos, even toys you both enjoy. Maybe also buy him a special cuddly, one that can be warmed up, for when/if you go into hospital. This he can cuddle and associate with you. And maybe even a special fleecey 'throw' which you can use now, and he can keep.
So sorry you are in this situation.
activate · 05/04/2010 19:57
crying is not a bad thing - it is natural and a 4 year old understands and will provide comfort to you and in that way can comfort themselves
Fliight · 05/04/2010 19:59
Joyce, you are preparing yourself and that's really important, because you need to be in a place where you are calm and accepting so that he can be also.
The more afraid you are, the more he will know this and be scared too...it's a mountain to climb for you but you are naturally doing it, step by step, and well done - many people are unable to get even this far - not that that's their fault, but it's a useful thing to be able to do.
It's a process and it won't be easy or fun but you will get there and so will he.
It must be unbearable to face this, I have never faced it, and wish nobody had to.
YoginiBikini · 05/04/2010 19:59
I would also suggest getting in touch with Winstons Wish
Activate has said some great things too, as have all the others
Keep talking here. You are very brave but need to stay strong. You can do that with support for yourself. Speak to you GP immediately in the morning to get the balls rolling for you.
Thinking of you. Don't despair.
catinthehat2 · 05/04/2010 20:03
Fliight · 05/04/2010 20:05
Nemofish · 05/04/2010 20:08
Write him a letter, joyce?
Talk about how much you love him, your hopes for him to grow and be happy, etc, and how your love for him will always be with him. Of course, all being well, that letter will just sit in the bottom of a drawer and never be needed.
FWIW I honestly believe that we go on after death, and love does not die, ever, if that makes sense. Just my opinion, and I have an IQ of 130 and so cannot possibly be wrong
BythewayItsBratley · 05/04/2010 20:09
What a truly awful situation to be in, puts a lot of other problems into perspective.
I don't really have much more to add than what everyone else has said, I just couldn't read your thread and say nothing.
I really hope the consultant can give you some much needed information and some guidance, and I hope everything works out for you.
FrameyMcFrame · 05/04/2010 20:20
Hope you are feeling a bit better.
My Dad had an anuerysm aged 41 and it was successfully operated on, he had 2 clips put into his brain.
It was a long recovery process but he went on to live another happy 25 years after his op.
He went back to work after a year, and even studied for another degree in archeology.
I hope hearing this can make you realise that there is life and hope after an anuerysm op, also my Dad's took place 30 years ago and was pretty groundbreaking at the time, but medicine has moved on since and ops like this now take place all the time with excellent results.
All the best.
joycetheripper · 05/04/2010 20:35
thanks very much for all your great suggestions. I'm looking at winstons wish right now.
LunaticFringe · 06/04/2010 11:23
Doodleydoo · 06/04/2010 11:27
Also, have a look at "No Matter What" by Debbie Gliori, although it doesn't focus so much on bereavement it is a lovely story and reinforces that love goes on after death - whilst being a silly story that any small child can understand. I think it also shows that you will love him no matter what or where you are.
OrmRenewed · 06/04/2010 11:33
No advice but can imagine how agonising this must be. So sorry.
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