hello

[sparky12345]

oh theres no one here.
well-this is probebly a good thing but just in case anyone is hesitent about starting this off-
hello-im sparky-welcome and feel free to talk.

what is the definition of a life limiting illness please?

i use the term life limiting as i have a very serious condition that is going to kill me.
however-its going to take a bit longer than [say]someone who is dying of cancer!

Is this a new topic sparky?

Hello by the way!

well-its not a topic-its a whole new section on here
but if you would like to make this a topic-feel free

Are those of us with children who are life limited welcome too?

Of course though I wonder if you would prefer a separate one for children, Riven? (lovely to see you back).

Hope you don't mind answering, Sparky.

I do also have MS. No idea if i will pop off early or not though.

i dont own the space
yep-i wonder if youd prefer a seperate one for children?
other than that-welcome.

Hello, what's this all about then. My Mum and DSis have MS - can I join in?

yep-if anyone has a life limiting/terminal condition or you are close to someone that has-this is youre space if you want it.

Would definately like to be able to talk about dd. Theres nowhere else

Keep opening my mouth to speak and then not knowing what to say.

Ds falls under this category.

Is all fairly new to us and we're just trying to find out as much as we can at the moment. Waiting the results of further tests and have been told to go along with a list of questions. Tbh I think we won't be any the wiser as all sounds terribly bleak. He's got some form of leukodystrophy. Probably Pelizaeus-Merzbacjer disease and his cp is a symptom.

Not sure at what point you start trying to find charities / forums of others in the same situation without feeling too much of a fraud. Do you wait until it "takes hold" before seeking these groups out or not? Not sure I could cope with seeing others go through what we know is coming our way. :(

You hear of people with cancer being told they have three months left to live then living for a year. Ds is still making progress at the moment albeit very slowly. No idea how long this will continue for given what's going on in his head.

Am sure other m'netters have some wise words as always and think the topic is an amazing idea.

i notice the last two posts was written earlier on in the evening-sorry i wasnt around.
im likely to pop in here late as im up till very late[my dd is a poor sleeper]
Riven-
feel free to talk about dd-this is youre space.
actually Riven-id like to say sorry to you-sorry.
ah this is hard-but im going to say it anyway-im very aware that i distance myself from you-and im sorry for this.
[god this is hard]-i do understand how you feel-there was a child very very close to me who died-this child had the same problems as youre child.
i closed down when he died-it was my way of coping.
but i do understand riven and i think youre a very brave woman.
sorry for not saying anything before-but as i say-i closed down.
anyway-welcome to this section-its a bit like a club that neither of us wants to belong to isnt it.
in some ways-we are diffrent sides of the same coin-
we are both going to lose our dc by death-you will lose youre dc and i will lose my dc from my own death
so in a funny kind of way-i think we got things in common.
[im not scared to talk about my own death]
this sounds quite morbid doesnt it-but hey-this is the life limiting group.
i hope i havent upset anyone-we might aswell get the ball rolling and help each other.
Yomella-welcome-and same as

Guess what I find hard is that when the consultant told us he was squirming in his skin. He obviously found it hugely difficult to tell us and then once he had skipped straight on to miracle cures that various people are working on. Don't believe any of it will affect us and anyway how can you depend on something that hasn't even happened yet? Friends are just stunned. Feels like it's up to us - well me mainly - to set the tone of how we all handle this. Feels like a big responsibility.

Sorry Sparky. Thoughts running round my head. Didn't respond to what you said. Totally understand what you say about the other side of the coin. Cannot imagine my dc living on without me either. Guess we all take it for granted that we'll always be there for each other until old age and then we can peacefully reconcile ourselves to the inevitable because it happends to everyone. Doesn't seem fair that we don't get this. What's kept me going through all ds's cp stuff is that we were building a future for him by working on moving around, getting him to communicate in whichever way possible ...... Now we don't have that.

yep-it is a big responsibilty yomella-make sure youre getting looked after aswell-dont forget about youreself.
how long ago did you find out yomella?
i found out quite a while ago[i knew i had it anyway] and i think we go through stages of "acceptence".
origannly-i kept thinking the docs had got it wrong[even though i knew i had it]as i didnt feel too bad.
then when i started to get more ill-i felt like-i dunno"this isnt really happening"-then there was this realisasion that this was happening.
i then felt quite angry-
i felt like i had done a terrific amount of work with my dc[sn]and a lot of fighting-then this comes along and theres nothing left!
once i got past this-i started to feel more positive about things and started to look at things a diffrent way.
now-i do have a lot of positive days-but i also get black days aswell.

It's just over a month since we found out. Felt physically ill for the first week with the shock of it and couldn't sleep. Still "processing" how I feel/think about it I think.
Have spent my time googling like a mad thing since, but kind of feel I know all I can until I've got more specifics. All seems a bit surreal really.
Have already started turning over in my head how/if I tell the dc. To date we've been really open with our eldest (7.10) about how ds2 is different and why and what we can do to help (when we thought it was cp). He still talks about ds's brain being damaged to explain why he couldn't join in in something and it makes me wish if only ... Leaning towards not and then only as much as I have to reveal when asked directly (which ds1 will do).
Would be interested to know how you've approached it, if at all.
The mother of one of ds1's classmates died from cancer last year. They kept it from their children and really wanted to preserve their children's routines and normal life. She spent the last month in hospital and their children only saw her once I believe. Looked to me like they found it very hard to take in afterwards because she'd been gone for a while but was still alive but now wasn't and the youngest one in particular didn't seem to fully understand what had happened talking about her mummy coming home soon. Thought at the time that my instinct would have been to handle it differently.
No sn with my other 2 though which obviously affects how you go about things.

I mosgly dont think about it. Dd could go at anytime and while i will last longer my other kids will lose me early.
Ho de hum

No problems sparky. In our club many of the parents whose children have already passed withdraw for some time. Hard being on either side of the death. The waiting and the aftremath.
I dont yend to think about mine.

Hi all, 37 year old ovarian cancer sufferer here. Been undergoing treatment for two years now - kids 9 and 12.

In my worst times I console myself that it is me and not one of the kids who is ill. To all of you with ill children my heart goes out to you, it is so much harder than my situation.

Much love to you all.

welcome to the group Winkcat.

sorry Yomella-ive been away from the group for a couple of weeks.
how have i approached it-well-some of my family know and some dont.
some of my family are in vunerable posisions themselves-so i thought id leave it a while before telling them.
with the ones that do know i dont talk to them a lot about it at the moment but i will do as i get more iller.
i dunno-i do get black days but other than this-i look at it as "well-im alive today and im ok today-lets get on with living"-can you see what im saying?
i dont want my living being wasted on dying.
obviously[the ones that do know]see me carted off in a ambulance sometimes but we dont make a fuss about it.
so really-i suppose things are alrightish for now-just doing/saying things as when need to really.
i suppose my religeon has something to do with it also.it helps.

I'm not sure if I should be here either..or maybe I should start a separate thread.

It's my dh who has a life-limiting illness although it is under control right now and he leads a fairly normal life. But it has had a MAJOR effect on our lives and has in many ways, shaped us as a couple. It's also changed my outlook on life, mostly in a good way, but sometimes not so good.

There are not a lot of people who know about his condition. It's not something that is easily discussed.

hello rockmemum
welcome to the group.
well-if he has a life-limiting illness-this is youre group.
its good to share the good and the bad.
im not feeling too good at the moment but i will be back shortly.

Not sure I 'belong' here as (hopefully) I'll last a good few years yet but I'm certainly not planning a long retirement. I've got Parkinsons which technically doesn't kill you but sure as heck limits your life. I can't even begin to comprehend the onslaught you must face if you find your DC is not going to make it. It happened to a good friend and I live in fear of it. I am still coming to terms with my diagnosis. I'm angry, sad and determined in turns. Hello to everyone here. I wish we were meeting under happier circumstances. I'm glad life limiting illnesses are not being swept under the carpet here at MN.

hello Stitchthis-welcome to the group.

Flippin eck - where is everyone?