You think of it as end-of-life care. It’s not. It’s given us a life…

When Emily was born with a traumatic brain injury I thought I would be able to look after her myself, even though she needs care 24 hours a day.

Staff from Brain House came to visit us while we were still in hospital after Emily was born, and we did go to stay for a night. It was nice, but I didn’t think it was right for me.

Then a few months later, I needed a break. I am Emily’s sole carer, and looking after her is draining – it’s really hard work. There are many nights where she just doesn’t sleep. It’s not like I can ask a neighbour to watch her for an hour while I do the shopping or get some rest.

Now Emily is 6, and we come to Brian House once a month. It gives me a chance to be me again. To catch up on things that need doing. To connect with people I haven’t been able to see.

You think of hospices as being there for the end of life. For us, Brian House has given us a life. It’s such a huge part of our lives, and I know I would be completely lost without it. Brian House is about making enough memories for both of us, for now.

There will come a day when we need Brian House for its end-of-life care, and Emily will be in the Butterfly Suite. It’s not something I like to think about, but I know when that day comes we will use it and the staff will be there to support us as they are now.

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