The word “hospice” often conjures up images of people living out their final days in a room surrounded by nurses. But one mother says the hospice she goes to with her family has given them a life they could never have imagined would be possible. And Sophie Bateson advises any parents who have a child with a life-limiting illness to look into their local children’s hospice as a place to have fun as well as much-needed support.
The 32-year-old said: “It’s one of those things where obviously the word hospice, everyone finds it scary. One thinks it’s the worst-case scenario, but it’s not. It’s giving you that extra life that you didn’t know you could have. Obviously being told all the things about my daughter Alayna when she was younger, my husband and I thought gosh, it’s scary, it’s horrendous, we don’t know what we’re going to do.”
Mrs Bateson said: “But to have a place where they can show you that actually you can do all these things, there is accessibility out there.
“It has a massive impact. It’s like we say, it’s our refresher. So you have all those stresses of day-to-day life, then you get to go somewhere like that and just refresh and then go on again for a few more months.”
Mrs Bateson has been going to Martin House Hospice in Boston Spa with her husband Jezz, and their children Harry, George, and Alayna, aged 12, nine, and seven respectively, ever since Alayna was four months old.
Alayna has suspected mitochondrial disease and has a range of medical issues, including developmental delays, hypoventilation syndrome, scoliosis, and muscular problems.
She is also registered blind and unable to walk or talk, and relies on her parents for all her care.
Mrs Bateson, from Keyingham, East Yorkshire, said: “We do everything for Alayna. She’s a very, very happy little girl.
“She laughs, she smiles, which is like a bit of a recent thing. It’s only been sort of the last year and a half, two years that she’s learnt to laugh and smile. But we do everything for her.
“We obviously do her feeds. We have to position her. We have to sit her up. We have to lay her down. We change her. We literally do everything for her.
“We try and do things as a family but a lot of the time, we do have to sort of split in two, whether it’s me taking the boys somewhere or Jezz taking the boys somewhere. And we tend to sort of live like that, really. We have to sort of try and fit in where we can.”
Mrs Bateson said: “So Martin House is like our home from home. It’s our base where we can go and we know that Alayna’s safe and we know the boys are safe.
“It sort of takes the weight off our shoulders in our day-to-day lives. Having family time and creating memories together is probably our favourite thing about the hospice.”
One recent experience that the family had through the hospice was going on a speedboat.
Mrs Bateson said: “We thought ‘Gosh she’s not going to be able to do it.’ She breath-holds and things, so we were panicking that it wasn’t going to be suitable. But they kept us calm.
“They said it’ll be fine and I couldn’t believe how accessible it was. And she absolutely loved it. Obviously the boys loved it as well as we did.
“Alayna yawned at one point, so they made it that little bit faster for her. It was one of those once-in-a-lifetime experiences that never even entered our heads until we got an email to say that we could have it.
“I think without Martin House Hospice we would fall apart a little bit.”