Sleeping too much

Thanks @Former-Member @Faith-and-Hope She was born with this disease. All through her life she has had devastating things happen to her, it is hard to see these things happen to her.

I was her carer for 3 years, before I was married, so I have taken on a mother role with her, which makes it more sad. She went blind when she was 5, and it goes on and on. In the past few years we almost lost her to phnenomia (I forget how to spell it) twice. The kindest thing would be for her to go to heaven, as she hasn't been able to do much for years, due to bone/muscle deterioration.

Sorry to have such sad news, but I really need someone to chat to, as this has been one of the hardest things to watch. She is an adult, but is very child like still. That is what makes it so sad.

I am so sorry to hear about your daughter too, @Faith-and-Hope. xoxoxoxoxo How is your daughter these days? My heart goes out to people with disablities and their carers. It can be very heart breaking being a carer. I had to stop being my sister's carer as I was too emotionally involved.

I really should try and sleep now. Thankyou so much for being there, Faith and Hope and Tawney. xoxoxoxoxoxoxo I've missed alot of what's gone on lately, on here, so forgive me please if I have missed something important. I am very emotional at the moment. But I care about you all. I need sleep, I'm probably not going to make sense, if I keep typing. night night xo

You will need decent sleep to help you cope @Former-Member ..... I hope you sleep deeply. I am sure you must be exhausted.

As emotionally taxing as it has been witnessing her struggles and decline, I think there are few circumstances that develop compassion so intensely ... it's like it's the result of a pressure-cooker experience .... heightened compassion is a gift she has given you,

Praying over you both ....

💐💗💕

@Former-Member

I hope you can get some naps in across the day .... ❤️

In answer to your question, my D2 is generally healthy now, and is very intelligent for one with her particular disability, which is a mixed blessing ..... her intellectual disability and physical limitations restrict what she can do and impact her independence, with safety issues at the fire, but she is bright enough to be very aware of that and resentful of the higher capabilities of her younger siblings. Sibling rivalry with them is high on her agenda at the moment, and she is being passively-aggressively oppositional a lot with all of us at the moment. Some of that will be her response to WH's illness and his manner that has come along with it.

Physically she is healthy now, but she underwent a lot of medical intervention in her first seven years. She was severely vision and hearing impaired, had open-heart surgery with a presumed NDE at 7 months .... lost her for an hour or so post-surgery .... tactile defensive (averse to touching anything so no sensory input from touch) .... Suffered lung collapse and repeated respiratory infections .... had rconstructive surgery on badly scarred tear ducts from continuous eye infections .... tonsils and adenoids epremoved to correct her low oxygen levels.

She is still quite speech-impaired from her early deafness, and blind in one eye, but she can read at a mid-Primary level, write very basically with a lot of support, read music and plays piano, paints and draws, is very good at jigsaw puzzles, and has a memory like an elephant linked to music and images particularly. And did I mention .... a good dose of attitude !!

Please chat across the day as you need to ..... I will be looking for you .... but only if you feel up to it.

😘❤️🤗 ..... 💐🌷🌺🌸🌻🍁🌹🐚💕

HI @Former-Member

I saw my therapist yesterday - and it is not an easy thing dealing with dd at times - alas - she is in cahoots with TS and this doesn't work well for me

However my therapist has told me that my dd is my most important relationship and I have few - and quite happy with the state of affairs except for Christmas Day. So - the plan is that if I have another one of these conversations with dd about the coming Christmas it is not going to be letting her off easily but insisting that this is the only thing I feel inflexible about and let my disappointment be known -

Let's pray it works out - I foresee the next decade plus with a pre-Christmas indication of my disappointment in someone else's desire to spend time she already spends too much time with

You are right that it's a tough read in the Grief and Loss thread - it seems people are being misunderstood and feelings get raw - I find it a hard place to go - and I feel grounded and have my mind in the right place (I think) - but it brings back the past - which for me is not a trigger - the memories never go away

But I think of you - I think I get up in arms for you - your loss is more recent than mine and also - yeah - it was different -

❤💜❣💔💙💕💗

AW - that's different

Decadian

Oh gosh! @Faith-and-Hope That must have been so traumatic for you what you have been through with D2. I am so glad to hear that she is physically better now. Good on you for asking, "what CAN she do"?

I won't type much as I am still feeling very fragile, but wanted to give you an update on my sister. It is good news now. I only just found out the good news.

My sister was transferred to another hospital late last night. They were more concerned with the bleeds on her brain, than the fracture in her bone in her neck.

Anyway, she is sitting up in bed having lunch, has been showered and might be going home tomorrow. She has carers 24/7 in a house with 2 other disabled people.

It was a huge shock seeing her last night and I am totally amazed that she is able to sit up.

Thankyou for caring. Hugs to you. xoxo

Hi to everyone on here.

@Former-Member The good news is, that my sister is able to sit up and might go home tomorrow. Seeing her last night, I didn't think it would be possible.