You are absolutely right, no parent should do what we have all done , I also think our relationship with our special needs children is a lot more intense as we have had to be their advocates for the majority of their lives, it’s so hard to explain the pain , the huge gap in our lives, Hollie was my reason for living , I do have other children and I love them deeply but it was a different fierce protective love for her. Her ashes are with my mum and dad , I miss her so very much , I wish you peace , take time to grieve, time to heal , it seems it will be a long process
My son was alert right until the end,in fact he ate his dinner the day before,the only thing was he kept bleeding from the needle in his arms. He did say while we were holding his hands mum dad I am scared .But then he tried to pull needles out of his arms and get out of bed.But then he said very calmly I got to go now,when I asked where he said death.
Hollie 1988 you are absolutely right, we are definitely closer to our children with special needs, because we have to stand up for them make sure they are protected as they are vulnerable, I was so close to my youngest son and protected him all his life . He needed me a lot more than his older brother… he was also my reason for living , he was my sunshine , I’ve had a tough day today, so many tears I miss him so much! They are such strong incredible beautiful precious pieces of us , there is no pain worse than losing a child , I am so lost without my boy… and scared of how much I can cope with until I’m exhausted from grief , that will never leave me … take care of yourself x
Tragically I wasn’t with him as he lived in a house belonging to the family as he wanted to be as independent as he could be and his carer was asleep in the bedroom next to his.I had a phone call in the morning saying he couldn’t be woken.I raced there as it is only a few mi it’s away and he has dead.He had died in the night and his carer hadn’t heard anything.He was half out of the bed and that image will haunt me forever.I was there before any medics and I was screaming and screaming.I knew nothing could be done.
Oh Benny, I’m so sorry , that must be incredibly hard, it’s hard to keep going isn’t it? My coping mechanism is as soon as my lovely brain starts to lead back to her final moments and last days I try to overlay that image with one of us both laughing while trying to write our names using our bums as pens or something equally silly , we had some wonderful times and that’s how I get through the very very tough and lonely days , denial it is but best I can do right now xxx