Hello lovely people. Can I come in?
My beautiful, complicated, funny, crazy, utterly lovely, severely disabled son died four months ago, aged 16. His inquest is tomorrow.
He was not expected to die. He was always healthy, but had a brief virus and we found him dead - blue and stiff and cold - in his bed in the morning.
His disability was all-encompassing. He took up 90% of my time and energies and the other kids had the remaining 10%. We have lost our beautiful boy and we have lost our role and meaning.
I live with terrible guilt too. I found him incredibly hard to look after. Life seemed a battle, dealiing with his challenging behaviour and with sleep deprivation. I found it hard to enjoy being a special needs mum at times, and the older he got, the less I coped. Yet he taught me everything about difference and acceptance and real humanity.
We miss him endlessly. Grief is so physical. My throat feels as if it is being held in a vice, my legs are jelly, my innards are liquid, my eyes constantly burn and my head throbs. Some days are ok. Some days my grief feels incompatible with life.
I have two other children I must try to stay strong for.
I have read some of your stories. cup I silently read about Bea on the SN board. So sorry you and I are no longer there where we belonged. Sorry for everyone else on here - I have cried over so many of your stories.
I need to go to my bed and try to sleep for tomorrow's inquest. Thank you for being brave enough to start this thread.