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Here some suggested organisations that offer expert advice on SN.

Getting my head around things, and failing miserably- ostrich syndrome.

(5 Posts)
hennipenni Thu 26-Jan-17 14:10:39

My DD3 suffered a ruptured AVM (brain haemorrhage type thing) at the end of December. She spent 3 days in PICU after emegancy surgery that saved her life, 14 days in a medical ward due to a chest infection and is now on day 10 on a paediatric neuro ward with a possible 7 more before she's allowed home with lots of community support.
We have spent the last 4 weeks on autopilot but now a discharge date has been set and we're starting to get our heads around her new needs and how we're going to cope (I know we will, we have no choice). She's done so well so far but it's hard not knowing how much of a recovery she is going to make, we don't know what she's going to be like in 2, 5, 10 years etc, we've been told some of her deficits won't ever fully recover and we're truly thankful that she's still here with us but it's hard when I keep looking back to how she used to be, and I yearn for my stroppy, gobby teenager back and maybe in time I will. Sorry if this seems insensitive to some of you but this haemorrhage happened so quickly and I'm having problems adjusting to what our 'new' life might be like.

lougle Thu 26-Jan-17 15:03:07

Hi Hennipenni, what a shock for you all. Not insensitive of you in the least. I still have moments like those, and DD1 was dx with SN 8 years ago! I hope you are getting lots of support. Cerebra is a good charity for situations like yours.

youarenotkiddingme Thu 26-Jan-17 20:26:26

Oh gosh what a shock for you all and what a difficult Time flowers

We often get told as parents of children with sn there's a grieving period - for the child/ future you imagined and the one that you face. So no, you don't sound insensitive. You need the time to adjust.

Cerebra are good.

Give yourself time. Celebrate the small successes.

hennipenni Fri 27-Jan-17 07:57:13

Thank you both, she's been called an inspiration by many who've met her. I'm truly humbled by her bravery and determination to overcome her problems.

I'll look into cerebra, haven't heard of them. We will get a lot if support from the children's trust when the time is right for her to return to her school (currently in year 11 and not sure whether she'll return this academic year)

Ineedmorepatience Fri 27-Jan-17 17:05:47

Good luck with getting your Dd home and for the future flowers

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