Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

1 2

Original poster

now i feel scared

26 replies

2shoes · 25/02/2009 12:18

what with the sad news today and last week I heard that a girl who went to dd's school(left as about 20) had died. I feel scared.
dd has cp and epilepsy, ok I know her epilepsy is "controlled" and she has no health issues. but I still want to go to her school and hug her. would be a bloody respite night.
go on tell me i am mad....

OP posts:

TotalChaos · 25/02/2009 12:20

given what you've been through so recently with your dad - sod it - if you really feel you need to hug her tight - go and do it.

mm22bys · 25/02/2009 12:28

I've been thinking about you and Riven today 2Shoes. It is so so sad. It has certainly reminded (for want of a what better word) of DS2's prognosis too.

Of course you are not mad....

Tclanger · 25/02/2009 12:50

This reply has been deleted

Message withdrawn at poster's request.

Original poster

2shoes · 25/02/2009 13:32

made me think of Riven too.

OP posts:

amber32002 · 25/02/2009 13:37

No, you're not mad. Having so very very nearly had my dh die this last fortnight, every hug is precious

pagwatch · 25/02/2009 13:49

Oh 2shoes. Poor you.
The trouble is we get into the day to day thing and yet life just bites us on the ass suddenly.

When my dad died I felt everything more acutely for ages. And a week after his funeral we nearly lost my DD. I felt so vulnerable but it was just that batch of circumstances.
I am sorry you are feeling like this. It is understandable - you're not crazy but it is connected to your dad I think. Grief makes us really take stock.

siblingrivalry · 25/02/2009 13:50

2shoes, I also thought of you and Riven this morning. Of course you are not mad -I would feel the same.

troutpout · 25/02/2009 13:53

Blimey you aren't mad at all..
Tc is right you know...go do it if you need to.

madmouse · 25/02/2009 14:01

Your not mad you're a lovely mum

And you have too much to cope with

All I can say he did not 'just' (gah that sound ridiculous) have cp and epilepsy but a very rare syndrome.

But hey, it is too close to home for me and my ds only has mild cp, so can't imagine how this hits some of you

bullet123 · 25/02/2009 15:04

It's completely understandable that you'd want to hug your daughter

kettlechip · 25/02/2009 15:09

Not mad in the slightest. It made me want to hug both my ds', and our situation is very different. I think it's such a stark reminder of how fragile life can be.

lourobert · 25/02/2009 15:34

I hugged my ds really tight as I saw this on the news at lunchtime. He was stood with his arms around my shoulders and he actually 'squeezed' back....only the 2nd time ever he has responded.

bunnyrabbit · 25/02/2009 15:38

Lourobert,
How nice that something so happy and positive can come from such a sad piece of news.

I agree with Kettlechip.

Hug and squeeze (or squidge as my DS1 would say) away

Woooozle100 · 25/02/2009 16:43

no not mad. dh and myself both felt the same. Went to conductive ed then to the park afterwards. dd been unwell last week so didn't rush her back to school. Fed the ducks instead

It does remind you how precarious our dc's future is. How precious now is. And I think to hear this on top of feelings of personal grief as you 2shoes must be particularly sad

that's really sweet lourobert

Original poster

2shoes · 25/02/2009 17:00

just rung dd's respite and she is fine(as I knew she would be) glad to hear I am not loosing the plot.

OP posts:

5inthebed · 25/02/2009 17:03

I'd be squeezing like mad.

Hearing things like this must be very hard for both you and Riven. I know I certainly felt like squeezing my ds2 when John Travoltas son died

Original poster

2shoes · 25/02/2009 17:09

i think(not a competion) that is worse for Riven, it must scare her shitless as her dd is so diddy. dd is nearly 14 and hasn't had a fit for nearly 2 years(unless you count when ds said she had had one as she was all starey, and I said no it was cot she had just been woken up:0 so I know my worries are a bit silly in comparison.
but I think that in the sn world we all just feel so vunerable, that something like this can make us think of our worst nightmare.

OP posts:

wannaBe · 25/02/2009 17:10

I missed the news story until just now, but when I was talking to my dh about it I said how horrible it must be for those people on mn whose children have similar disabilities to hear this type of news.

sarah293 · 25/02/2009 17:45

This reply has been deleted

Message withdrawn

Original poster

2shoes · 25/02/2009 17:46

oh Riven that must be so hard.

OP posts:

bubblagirl · 25/02/2009 17:59

oh guys this has really made me feel for you we all have such different worries i forget some of you have far worse worries than me riven what you have just said has really bought tears to my eyes

you know ive spent all day today crying and feeling sorry for myself as i am struggling with ds and i dont have the same worries as you at all and its made me feel slightly silly now

big hugs to you all and big hugs to all your children xxxxxxxxxx

Original poster

2shoes · 25/02/2009 18:01

bubblagirl all our worries are different, but that doesn't make them less worrying iynwim.

OP posts:

bubblagirl · 25/02/2009 18:14

i know there all different it doesn't make either less important but does make me realize some of the worries you guys have that maybe i never really thought of before xx

devientenigma · 25/02/2009 18:43

I just wanted to cry when I read riven also. Although my son has different needs, I do exactly the same. It made me feel slightly normal also to keep checking, the hand on the chest thing. Also the issue with is he life threatening enough. DS is down syndrome with a heart condition, had open heart surgery and looking forward to another (not). His heart will never be repaired. He gets pneumonia every winter and starts earlier and lasts longer each time. Another risk of his which people brush aside is his risk of endochartitis, which anyone with a heart problem is at risk of. Starting with bacteria in the mouth. As son is also severly tactile defensive due to his SPD he can't brush his teeth. Thanks for the rant and I am thinking of you all.

springlamb · 25/02/2009 18:56

Riven, 2shoes, feeling for you today. I have had many 'there but for the grace of god' moments, today a really poignant one. DS does not have epilepsy (or if he does he has never had a fit in 14 years).
But I am feeling for my friend R and her son T who does not have cp in his life, but does have very severe epilepsy. They fight with this 24 hours a day, yet still smile.

Flip

1 2