I can’t really imagine what it must be like having a sick child. My Mum has talked a little bit about me as a child when it looked like I was seriously ill – I think my aversion to having blood taken comes from then. However, I did some editing on this book and it has so many experiences from families in it that I am getting a little bit of a glimpse of what it must be like. Rachel who wrote this book has experience as a chaplain, a local church priest and being the mother of a child who gets to go to hospital regularly. It is a helpful book for people in pastoral teams to read or for families who have a sick child to give to friends or relatives to help them get a fresh perspective on the situation.
These are a selection of the quotations:
Living over a prolonged period of time with a child with a disability impacts your hopes and dreams of family life, your independence, your marriage. Living with unfolding loss at different ages and stages in painful. Finding pace to process ongoing loss is needed, understanding this is important.
We have to look after ourselves in order to help our daughter and grandson. Part of that is getting used to several ‘new normals’ along the way. Great advice because it gave us permission to share out our time at the hospital and not fee guilty. We didn’t both have to be there all day everyday.
Ongoing care through eg a caring text message of support with reasonable frequency can be very encouraging. Don’t ask lots of questions in it, or expect a reply, just offer care eg Thinking of you as you continue to care so faithfully, Keeping you in my thoughts and prayers.
One lady made our family a beautiful prayer quilt which had pockets on it. Those who prayed had written prayers and words of encouragement and put them into the pockets. It was such an incredible gift to our baby and to us and we returned time and again to those pockets to remind ourselves of God’s promises and the support we had.
There are also lots of practical ideas in the booklet and sections on schools, the wider community, ideas for prayers and resources which are helpful.
The booklet is available from Birmingham Children’s Hospital Chaplaincy £5 – http://www.bch.nhs.uk/cpsc