For Bideford parents Jo and Jon, driving to a children’s hospice for the first time in 2008 was an understandably daunting experience.
The couple and their five-year-old son Sam had been offered a couple of nights’ stay at Children’s Hospice South West’s Little Bridge House hospice in Fremington and were unsure what to expect.
Jo said: “We were really apprehensive because we expected it to be quite clinical. I thought it would be quite sad and quite morbid and wasn’t looking forward to it at all.
“I was very nervous driving down the road but I walked through the door and it was nothing like I expected."
It was just amazing; everything was completely normal and I didn’t want to leave. We came for two nights and I wanted to stay longer.
Ten years later, the hospice has become almost an extended part of their family – a place where they all look forward to visiting, especially Sam, who will be 15 years old on November 29.
The teenager, who goes to Pathfield School in Barnstaple, was born with an undiagnosed neurological condition that affects his physical and mental skills.
“It affects pretty much everything,” said Jo. “Sam is in a wheelchair; he can’t talk or support himself and is tube fed. He needs everything doing for him so in a way, the care he needs is like that of a new born baby.
“But he’s actually a really happy little chap and coming to somewhere like this, where it really is all about making the most of life, is just perfect for him.
He absolutely comes alive with all the attention, the resources and the facilities that are on offer.
"A lot of people would want to wrap a child like Sam in cotton wool and say he’s poorly, he’s frail, he’s life-limited and has got lots of problems; but actually, coming here and getting on with stuff like getting in the pool or out in the garden or in messy play area is fabulous.
“Because Sam can’t communicate verbally, it took him a while to get to know the hospice but now he comes through the door and his arms are up and he does a lot of vocalisation because he’s so excited to come here.
“He particularly likes the sensory room and going in the hydro pool; he just loves everything because he gets so much time.
“And Sam loves the amazing music therapy sessions with Ceridwen, the hospice’s own music therapist; he responds to them so well and has regular sessions when he stays at Little Bridge House. He was also fortunate enough to be part of the CD that was made, something that we will be able to treasure forever.
I was always very hands on and it took me a little while to let go.
"I’m a bit of a control freak but now this is the one place where I’m so comfortable to walk away and know he’s in the best possible hands and he’s going to have the best time when he’s here. He’s now coming in for teenage weeks without his parents.”
And that expert care, support and vital respite is something the couple say extends to the whole family – not just Sam.
“For me that’s the big thing about Children’s Hospice South West,” said Jo.
“It is the only real break that Jon and I can get; Sam has never slept and 15 years of sleepless nights takes its toll. To know that we can have a few nights where we can now go home and have that catch-up time means the world.
I think without that, a lot of families like us would just not be able to get through life and cope with the next challenge that’s probably only just around the corner.
“It’s on the doorstep and it just means that if we’re having a bit of a rough time with Sam, if he’s not been sleeping or he’s quite poorly with something and it’s taking all of your energy and strength to get through that time with him, it sometimes keeps you going knowing that you can recharge your batteries at the hospice in a few weeks.
“Of all the places we’ve ever been with Sam, the hospice is the only place that thinks about the whole family; that parents and siblings need support as well. You have a medical appointment that is probably only 10 minutes long and you can’t get through everything. But here, people have got the time to sit down and talk through the problems you’re facing.
The support is immense and it’s not just about the stays, it’s the contact in between.
"They give you a ring and make sure everything’s ok and there are people at the end of the phone all the time if you have a problem.”
For the family Little Bridge House has been a place where happy memories are made – Jo and Jon were engaged at the hospice and are even exploring the possibility of getting married there in the future – but they also take comfort in the knowledge that the charity will be there to support them whatever the future holds.
“At a hospice, undoubtably, there are going to be some sad times but it’s not just about end of life and in a children’s hospice that’s just a very small part of what they do.
“I don’t like to think about it, no parent would, but it’s comforting to know that when we get to that point, we’ve got a whole support network around us of people who already know us and know Sam.”