How to cope

My disabled daughter died at the end of May. She was 9 years old. She had spent most of the last two years in hospital and looking after her was my life. Now that she has gone and the initial numbness is wearing off I just don’t know how to cope and carry on. My whole sense of identity and my entire life revolved around caring for her.

In reply to Jlyca

Hello jlyca, I'm so sorry that your daughter died and you have started this awful journey. It is very early days for you and you will still be in shock. My son is a year dead yesterday and those first few months were one's of disbelief, fear and like you say not knowing who you are anymore. There really is no short cut through grief, you have to go through it. Would you consider putting your name down for councilling? And I bought a lot of books on grief, I found it helped to read about what I was feeling and what others felt. This site has also proved invaluable. Take it hour by hour and then day by day. Sending you hugs xx

In reply to Jlyca

Hello Jlyca. I'm so sorry that your daughter died. You must feel as if you have been flung off the end of a running machine having cared for child for so long.
It is coming up for a year for me next month and I remember those early months very well. For me when the numbness began to wear off the pure sadness was added to by the talked about stages of grief. They seemed to come in no particular order, and sometimes all at once. This is a very tough time for you, and very very raw early days.
I have found great comfort in going to the Compassionate Friends meetings. I wonder if there is a group near you?
Just to get through the early days I found it helpful to split the day in to three and look no further than the next third. I read anything, about losing children, that I could get my hands on. I think it helped.
I do hope you have some support to help you through.
Sending love xx

Thanks for your replies. I’m on the waiting list for counselling at a local centre.
I just about get through the day by not thinking and keeping busy but then once my son is in bed at night I just end up dwelling on it all. It seems now that we are 6 weeks on from her death everybody expects me to slot back into old routines and patterns. But that just isn’t going to happen as those routines and feelings just aren’t the same anymore.

Hello Jlyca,
So sorry about your daughter. It's nonsense to expect to be "as you were" after 6 weeks. We are 6 months on and a friend of ours is 8 months on, from losing our daughters and there's no way that we can function normally. It's a long road we travel, with no obvious way out.
Just take care of yourself and don't let other people tell you how you should feel. We're all different in our reactions and time moves differently now.
J xx

Hi jlyca I was in a mess when I lost my disabled son he was 20 I just stayed in bed most days in the beginning .thaen I just sat in sofA all day I had nothing to do now. It is 8 months now.” I started th post my disabled son cause I wanted other parents of disabled children to talk and share experience.itis so hard tears is apart of life now cry if you need to.

Thanks for the replies.
I really don’t want to do anything each day, but unless I keep myself busy I end up thinking about things and then crying.
My son is 6 but has Down’s syndrome so he really doesn’t understand what has happened to his sister. I have to remind him every day and that is really hard. He thinks now our school holidays have started he’s going to see her again. I think that stems from last summer when she had an amazing 7 weeks out of hospital over the summer holidays. He told me this evening he wants to give her a hug and a kiss. I know how he feels as I’d give anything to do that too.

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