Another week in which the stress and pressure generated by the actions of the Trust has been almost unbearable. I don’t have words to describe what this experience feels like. I say ‘almost unbearable’ because the only other step is ‘unbearable’ and then what is there?
As I’ve said repeatedly for what seems like forever now, the death of a child is any parent’s worse nightmare. To then have to deal with the appalling, pretty much inhumane system that kicks into touch when this happens, unexpectedly, in an NHS setting, is beyond words. I’m at the stage that any update on the latest development in the twisting, turning, shifting, contradictory process makes me cry. Simple as. Very classy.
So fuck off Trust (legal team and whoever else is fuelling this horrible, nasty, destructive and completely unnecessarily designed process) for a few moments. And let me focus on the precious moments. Team LB. What can I say? A group of people who are dedicated, passionate, experienced and committed, bringing a shedload of expertise, networks, ideas and action. In the background, INQUEST.org. A remarkable organisation. Unobtrusive, non-intrusive and quietly and efficiently effective. A perfect mix for the recently shell-shocked.
And then an army of family, friends, colleagues and people we don’t know. Offering thoughts, good wishes, love, kindness, support, space to grieve, momentary havens from hell, cakes sales and accessory swaps. Random moments of beyond kindness. People raging with us, moved by the death of our beautiful, funny dude who was goodness itself.
Preciousness we never really knew existed.
mydaftlife 
Still more pain for you and your family, but beautiful words again Sara about your followers who are indeed sharing your grief with you. The death of a child is as you say every parent’s worst nightmare, lived with every day by parents of children with special needs, especially those with epilepsy. Every time I read your next post I feel even more strongly that it should all be published and made compulsory reading for ALL professionals involved with children and young adults with special needs. They still won’t understand special parents but maybe it will give some insight into our feelings?
My son spent several weeks in an assessment unit many years ago….. When we were provided with a report when he was discharged I was very upset to read their thoughts on ‘Mum and Dad’. They thought it odd that ‘Mum and Dad’ often visited separately! The unit was 85 miles from home, my husband worked 30 miles from the unit. We made sure one of us visited every single day and at weekends both of us, with his younger sister. Far too quick to judge – and dared to put it in writing!
Stay strong and keep the happy memories close to your heart. Xxx
Thanks Jenny. Very kind words. That is so outrageous about the staff comments about your visiting your son. Speechless really (although, of course, I’m not). This is something that really should go into the curriculum for health and social care students. Why the actions of parents are constructed as problematic seems to be a default position, while there is so much abstract talk about working with them. Gggrrr.. xxx