Today we got a call from the NUM at Bear Cottage asking us when we would like to come for respite. It's pretty tragic that we haven't ever - not even once - had a holiday together as a family, so we are very excited to go and stay at Bear Cottage near the beach. We have decided to wait until the September school holidays so that hopefully the weather will be a bit warmer.
The facilities sound great. We will stay in a 2 bedroom apartment downstairs and they have booked Ashlea an upstairs bedroom where there is nursing supervision and hospital beds (so hopefully she can't fall out). I'm not quite sure how that will work out, but we'll give it a go. They have a spa, toy room, sensory room, sensory garden, chef, play therapist - everything you could possibly need for a week's respite. The timing will hopefully work out perfectly too - a nice break before the big T.
I am very excited that we have this opportunity for respite as a family, but to be honest it also brings up all those mixed feelings again. Bear Cottage was originally set up as a children's hospice. We are taking our first family holiday at a children's hospice. I can cope with that because I know one of their aims is also to provide respite care - which is what we are going for. The idea though that we could be holidaying with people whose children are dying is heart wrenching. Even the idea that we meet the critera to be able to go there is a reminder of how different our lives are now.
When the girls were freshly out of the nursery I found it very hard seeing other sick children, especially at the hospital. My own grief over what had happened was so overwhelming. It was like I wasn't just grieving for Ashlea, it was almost this collective sense of grief for all the children and families who found themselves in a position like ours - as crazy as that sounds. It has taken me a long time to develop a thicker skin. I now know how to go to the hospital and not 'see' what goes on there. I focus on what I'm there for (and getting out the door quick smart) and don't really look around at anyone else. At Bear Cottage we will be in close proximity with other families with sick children. There will be time to look around. There will be time to really see what's happening.
I'm not sure how much to tell Emma and Audrey about Bear Cottage. They are beyond excited that we are going on a holiday to the beach. They know that only sick children and their families get to go to Bear Cottage, but I want to shield them from the harsh reality that children can die. Mainly because I don't want them to make the connection and start worrying about if Ashlea is going to die. As a worrier, I am raising another generation of worriers (not deliberately of course - but it seems to be an inherited trait!).
I think I'm just going to leave it at 'there will be other sick children there' without giving any further information. We are going to have a holiday and focus on the fun and the positive. If questions come up while we are there then obviously we'll deal with them at the time.
Now if those of you who pray could start putting in requests for warm sunny weather from 24th September to 1st October that would be much appreciated!