Another funeral

[needmorecoffee]

Someone from our 'special' group just lost her little boy. He was 5.
Thats now 4 from the group of 9.
And now rather selfishly I'm paranoid dd could be next. We know she only has a 50% chance of getting to 18 and some of the kids funerals I've been too, the child has less severe CP than dd and didn't even have seizures.
Before I had dd and entered into 'disability world' I'd never known a child who died, now its loads

you have my deepest sympathy. it is a horrid feeling. 2 of dd's classmates have died and i was so upset.
the worst bit was a T's funeral G's mum said something along the lines of "that could have been one of us" and it was next time.

So horrid whgen these things happen

haven't lost any friends, but have lost 2 child relatives over the years so some idea

This was the biggest shock that I had when I started working at the children's home, having worked in care for about a year I got used to wheelchairs, nappies, non-verbal people, hoists.... but have never worked in a situation where a client had passed away.

One of the children passed away about 6 weeks ago, and there are others with life threatning conditions.

As differentyearbuttthesamecack says, make every moment count.

I'm sorry needmore, so sad. I used to regularly visit the children at Tadworth Court Hospital and found the occasional deaths very hard to deal with.

But at Christies 'Head Girl'.

at the loss, so sad.

and also a smile for the head girl, Christie.

Oh NMC it is the hardest thing, its just not the way its meant to be is it.

At my young cousins funeral the room was full of teenagers some from his ms school & others, friends with the same condition (DMD) their parents & carers. I was amazed at how these parents & young men had the strength & bravery to attend.

Sorry nmc. It's very hard isn't it? An online group I use lost another child this week - he was 4 and was buried on Friday.

It's not selfish to be paranoid about your own.

I've sort of got used to it with 'online' groups. The Infantile Spasms list and a CP list I'm on, I think we've lost 10 or so this year.
Its just harder when its kids you know.
While I can't imagine what the mums are going through truly, I do go over this in my head. When dd was born we were told she wouldn't live and it was terrible. Now, 3 years on I still imagine her funeral and she sleeps next to me so I can check her breathing all night and to feel any seizures (they are non-convulsive so hard to notice initially)
Life is so fragile and I think this is why when I see parents not appreciating their non-disabled child I react so badly..

Yes the ones you know are harder. We too were told dd wouldn't live - I planned her funeral and cared for her 'at arm's length' for a long time. She hasn't been at immediate risk for a long time but the feeling is hard to shake.

what a heartbreaking situation for so many of you that have posted on this thread.

You are not being selfish, it's understandable you worry NeedmoreCoffee. I'm sorry so many children have died .