How do I help DS deal with my possible death, he's 3.9

[joycetheripper]

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.

[ChippingIn]

JTR - please try to hang onto what Lou031205 said, please. Hopefully this will be able to be made good for you and you can resume a more normal life and be around for your DS for a long time to come.

In the meantime, write everything down. Do videos if you can (even short ones on your digital camera) - reading him a story, talking to him about everyday things, cuddling on the bed. Talking, talking, talking so he can always hear your voice and hear how much love you have for him. Write him & DH letters, tell them everything you can think of from the past and all you want for them for the future... take photos, lots of photos - even if they are all on the bed together - each & every photo will be different and something to be treasured.

I also agree that getting a blanket that the two of you can share now, which he could have to cuddle if he does lose you and that's a long way from certain!!!

Tell DS it's OK to love lots of people and cuddle lots of people - but other than that, I wouldn't 'prepare' him as such.

Sending you very big hugs & keeping my fingers crossed for a good dx.

I'm so sad there are so many of our MN'ers who are struggling here, big hugs x

[MmeLindt]

Joyce
Hope that you get the results and can start treatment soon that will help you be able to enjoy life again.

One thing my DC absolutely love is to hear stories about my childhood, about our childhood pets, about school etc. I told them the story about when my mum threw all my clothes out of the bedroom window because I had not tidied up yesterday, and they giggled for ages.

Perhaps you could write down some things like that. Nothing important, but just sweet little stories that tell a tale about your life.

I do hope that you don't need it, but I get the impression that you would benefit from having written it down.

Keeping my fingers crossed that you are soon diagnosed and on the mend.

[joycetheripper]

Hello again! Just wanted to let you know the MRI results are still not in. The last few days I've still been a bit stronger on the increased meds. Still have very limited energy and fair amount of constant pain but able to get about a bit within a small radius of my house and within my house, whereas I was totally bedridden the week before. It goes up and down like this all the time so its a common pattern but I'm really happy to be in a better week at the moment.

My new cleaner started today and the house looks really nice so I'm really pleased about that. DS and I folded laundry together while she did the hard work .

[ChippingIn]

Thanks for the update - sorry you don't have your results yet though.

I hope your cleaner is lovely, stress-free & good!!

[Bessie123]

Joyce good to hear you have a cleaner - it sounds like you need to take as much pressure off yourself as possible. My dd is ill so I can't get out too much this week but I will be in touch next time I come to Colchester (won't be long). x

[jenduff]

Joyce - so nice to see your upbeat update - hope the improvements continue.

[joycetheripper]

Hi again, just popping in to say hi, still nothing new to add though. The first part of yesterday was bad because I coudl not wake up at all so DS and i spent the day in my bed watching videos and I dozed next to him while he watched them on my laptop, he was really good. Towards the end of the day though he was understandably bouncing off the walls and my head was killing me so we were grating on each others nerves. Anyway its the weekend now, hooray! Hope you are all having a good weekend too.

[activate]

Joyce you need to contact your consultan't secretary and ask how long until the results from your MRI will be available (as if you're paying for it they are virtually instantaneous)

Also if you are unable to wake up in the morning and in such pain you need to ask for some support - friends and family or GP? you need people to check on you, you need people to take your child out to run around. Where is his father in all this?

[joycetheripper]

I did contact her, she said to try again next week.

I was able to wake up, as in, were there an emergency, and I got up regularly to make us food, but then I dozed while he watched videos etc. We dont do that every day, that is a very rare thing, I'm not at all neglecting him in it. He does go out and run around a lot, and go to preschool etc. Sorry I know you werent attacking me I just feel defensive and want to point that out. It isnt much different than a SAHM having bad flu and having a sofa video day every now and then.

DH works full time but he is very hands on.

[joycetheripper]

sorry I realise I said I could not wake up at all. I meant I was just so tired. every time I woke up I just wanted to go back to sleep so when I was making food etc it was as if I had been totally sleep deprived, like with a newborn, even though I had slept loads.

[activate]

I am definitely not attacking you (and I have personal experience as I mentioned) however I have the help of older children and friends as well as DH and odn't know how I'd cope without it - so those days where I can't get up I know that youngest ones are exerciesed (like dogs)

[joycetheripper]

I'm really sorry for being so defensive. Its my fault. I realised I had made it sound like DS was not being cared for properly when that wasnt the case and I wanted to quickly correct the misunderstanding. I have a little bit of support but not a huge amount.

[kando]

Hi Joyce, I've just read your thread with my jaw on the floor at what you are going through. My heart goes out to you and to your family. Your little boy sounds like an absolute angel. I cannot begin to imagine how you get through each day. I just wanted to wish you well and hope that you get good news when you finally get your results. lol xxx

[Snuppeline]

Joycetheripper, I've read this thread and just wanted to say that your very brave and doing really well for your ds. I don't think a dvd day now and again will be a problem! In fact, it was probably a really nice day for your ds sitting snug in bed with you.

My mom was very ill from I was 8 and I don't acually remember her as being well at all. I did understand that my mother was a bit different from other mom's as she wasn't up and about as much but I can tell you that I have the most wonderful memories of my childhood. Mostly because she was always there and had time to talk to me. She told me something when I was a bit older about her getting to terms with her illness and I want to share it with you. She said that the hardest thing for her was to realise that she couldn't measure herself against those who were healthy. She said she had to reconfigure her thought pattern away from thinking "I didn't get to do a, b, c or d today" to "I did do f and g". The smallest little things became her victories, such as just getting up, reading me a story or making tea. So a day or two in bed can be the best adventure a little boy can have, the bed can be a boat at sea or a train heading off to exiting places...

I hope you get your results next week. x

[missmoopy]

I have no advice, sorry, but I wanted to wish you all the very best for your surgery and the future. Huge huge hugs xxx

[inmypants]

joyce have you tried contacting homestart in colchester. They would be able to provide you with someone to chat to and to give you some support and even to help you with your ds even for a couple of hours during the week. I know the scheme well and would be able to give you some idea of what they may be able to do....

[kando]

what a lovely post Suppeline x

[kando]

SNuppeline, even

[crabb]

Any news, Joyce?

[joycetheripper]

Snuppeline that is a very lovely post Made me feel good to read it.

Sorry its taken so long to respond to the thread. I've been really very tired and had some times with a huge amount of pain and just couldnt really bring myself to concentrate enough to post here. I still havent had the MRI results, I phoned today they said there is nothing there. Seems pretty fucking annoying if you ask me.

I am half way normal about 30% of the time which is lovely though. Walking short distances outside and doing a bit of my work on the laptop and a bit of light housework and playing with DS & chatting to friends. I just get very tired and in pain very quickly.

[joycetheripper]

Just wanted to pop on and say I had my results today. I have a cerebral AVM. It looks like its already had a bleed so its pretty dangerous. I'm going to see a neuro-surgeon. Will post later.

[crabb]

Oh, Joyce. At least you know now. Every bit of knowledge is a step closer to you getting through this. When do you see the neurosurgeon? Am thinking of you.

[joycetheripper]

thank you. I've just teared up for the first time since I found out at 9am. I've known it in my gut so I'm not too surprised. I dont know when I see the surgeon. soon because its already bleeding so I could die any time. Its just random now I think if they remove it before I have a fatal bleed. Dont know.

I'm really tired because DS isnt sleeping anymore. He's been sick with ear ache etc and having nightmares and bad cold and waking up crying only for me, really hysterically. Even though I have taken sleeping pills I cant sleep through the noise of it even though DH tries to get him through the night himself. So I'm literally getting about 3 hours sleep a night now too. Which makes it so much harder to bear the constant pain. I'm so fucking tired. I was thinking of checking into a hotel but it feels so selfish. DS will wake up as he does every single night crying for me andI wont be here and he will get hysterical. I just dont think I can live with that.

I was walking with DS home from the GP today where I got the news and I was feeeling really dizzy and like I was going to fall asleep in Tesco and I thought "oh fuck what if I die right here in Tesco alone with DS" and I was so panicked I just wanted to be with friends so he wont be alone if I die.

[jenduff]

Joyce I'm at a loss as to what to say. I am hoping that now they know what it is that they will deliver prompt medical attention.

I think you are remarkable and inspirational and I hope that you are back on here soon fit and well.

FWIW I think a hotel might be a good idea for you for the odd night - you need to sleep for your own health and yes your DS may be crying for you but it is only a short term / occasional solution - he won't remember it long term. It may also help prepare him for when you do have to go into hospital.

[thumbwitch]

Joyce, haven't seen this before - so for you and your situation. I hope you get your surgery quickly and that it all goes well.