Seventeen-year-old Grace has been going to Little Havens since she was two. She and her twin brother Billy were born four months premature and both have cerebral palsy. Grace’s is four limbed which means she spends her waking hours in a wheelchair. She also has epilepsy, is visually impaired and fed through a tube.
Jo and her partner Richard were referred to Little Havens by their Social Worker when Billy and Grace were two. Neither of their families live locally and they were struggling to cope and feeling isolated.
“It was really hard because we had two children, both with severe disabilities and we had no family around us to help. When we were referred to Little Havens we were all exhausted because Grace never slept due to fitting through the night as a result of her epilepsy and other complications.”
When Grace and Billy were six, Jo went back to work after Little Havens gave her the confidence to do so.
“They helped me realise that I could cope with looking after Grace and Billy and still have a job that I loved! They just showed me the light at the end of the tunnel. It’s not just about ‘Making every day count’ it’s about showing you can do it, and there are people there who can help. I used to say things like ‘I can’t do this’ or point out what I’d got wrong and they would listen to me, they never interrupted, they just listened. They would then show me how to do the procedure I was struggling with and made me feel less alone. That really helped me realise I could do this.”
Now, as Grace approaches transition from Little Havens to adult services, she has been receiving care from The J’s Hospice.
“When we first arrived at Little Havens, I really was at breaking point and felt like I couldn’t cope; so the sense of relief was huge.
“Before I went there I felt so alone and so low, but after a couple of stays I realised I had a support network who I could call anytime I needed to. When I am struggling, even now, I know I can contact Little Havens and they are there ready to help and give me some time to not only recharge my batteries, but also allow me to talk it all through.
“Transitioning from children’s to adult’s care services can feel daunting. But the team at The J’s are great – they put the plan together before they started caring for Grace, it was really reassuring that all the measures had been in place before we got started.
“They are going to help me with the legal stuff like power of attorney; so that I can continue to make sure Grace gets the care she needs. They’re also going to help me find organisations for support and placements for Grace. It would be so much harder to think about and get everything sorted without The J’s.
“They come to the house once a month for four hours and Grace goes to their Inspire days every six weeks with other young adults and they always have different activities and experiences which are accessible for her and she really enjoys them.
“I don’t know what I would do without The J’s, I think I would just pray that someone would come along to help me. I just don’t think I could do it without their help and support. The service they provide is so vital and I’m so glad that we are able to access them and still access Little Havens for the next two years.”
If you would like to donate to Havens Hospice please click here. (www.havenshospices.org.uk/donate)
Published in 2018
Julie - Vivians Mum
I became very emotional during that first visit. I didn’t realise that it would be a home from home