WITH New Year nearly upon us, most families will be looking forward to spending time together, going for meals and drinks or possibly even on holiday.
But for those living with disabilities even the most simple pleasures we take for granted become nearly impossible.
The Journal visited a North Devon charity offering respite to parents or carers who look after disabled children to find out just what the services mean to those it caters for.
Caroline Furze, from Tavistock, brings her son Ben, 12, to the Children’s Hospice South West centre in Fremington on a regular basis to give her a well needed break.
Ben suffers from multiple disorders including diabetes insipidus and a type of epilepsy which can see him fitting up to 30 times a day.
“When the seizures start they take over your life,” she said. “You are about to go out and he will have a seizure or you are in the car and you have to give him emergency medication. You can’t plan anything.”
Caroline was referred to the hospice around four years ago and said being able to bring Ben there allows her to get away.
“I can go shopping and not think about who is going to look after Ben,” she said.
“Today I have done absolutely nothing but read. I don’t get chance to do it ever. I watched a DVD and some TV and just completely relaxed.”
Caroline said she doesn’t have to worry about Ben as she knows he is in safe hands at the hospice.
“And he loves it here,” she added. “Sometimes he looks astme as if to say, what are you doing here, Mum?”
Bringing Ben to the hospice has even allowed Caroline and her husband to go on holiday, just the two of them.
“It is so nice because when you have a child that needs looking after 24/7 it is hard to get a babysitter,” she added.
“My social worker says my face always lights up when I talk about this place because it is the only place where we get time to ourselves.”
Caroline said the staff are amazing and supportive and always on hand even when she isn’t at the hospice.
“If you are having a tough time they will always do their best to fit you in,” she said.
For more information or to make a donation visit www.chsw.org.uk.