If you have never heard of Sebastian's Action Trust, it is an amazing charity inspired by a young boy's special wish and is a place which caters for the whole family, not solely the child with a life limiting condition.
It is impossible to say how isolating it is to lose a child, the intense 'new' life which consumes you when fighting for their well-being and survival is suddenly not of any relevance any more. Life goes on within the busy ward you once lived on and although the nurses are always welcoming, you have no reason to be there any more and you feel lost.
Society and the life you left the moment your child is diagnosed where day to day chit chat becomes so trivial is not one you can just step back into and so you drift, feeling even more lost not only because you don't have your beautiful child in your life any more but the very meaning of your own life also seems utterly pointless.
We were lucky enough to have found Bluebells, a holiday retreat run by Sebastian's Action Trust as it had a hydrotherapy pool which was one of Skye's dying wishes to be able to swim again. The staff have been in the shadows walking with us ever since. Despite the way I feel about life these days, I do not want Jesse to miss out so he was thrilled to find himself back at Bluebells and remembered so much about what he and Skye got up to when they were both last there. Thank you so very much and good luck with the looming weekend you have planned.