CHRISTMAS is a special time for most families and parents are busy doing whatever they can to ensure this is the best time of the year for their family.
But for Charlotte and Dave James-Bruce, knowing it could be the last one they spend together as a family means it’s always extra special.
Their children, Findlay, 9, and Iona, 7, both have an extremely rare Trisomy condition, resulting in low muscle tone which means they need to use a wheelchair, and both are tube-fed.
Findlay also has epilepsy, while Iona has a multitude of complex issues and can’t speak so she uses a mix of sign language and communication software.
Everyday life can present a number of challenges and the festive season is no different, which saw Iona spend her first Christmas in hospital.
Charlotte, 32, said: “The children can have good days and they can have really bad days. Christmas, in particular, is always quite a frantic time because you’re running around trying to do the dinner timings, just like anyone else, but you’re also trying to fit in when meds are due.
“You can almost guarantee you’ll be in the middle of something in the kitchen when somebody’s pump will start beeping or someone will have a seizure halfway through sorting Christmas dinner.
“It’s busy but they are our only children so we have never known any differently, which I think makes it easier. This is our normal.
“You never know whether your child is going to have another five Christmases or 10 Christmases or whether this will be their last.
“A couple of years ago, Iona had a fantastic Christmas. Then, in January, she ended up in hospital for five or six weeks with pneumococcal meningitis and was extremely ill. You just never know what’s around the corner.”
Rachel House is a ‘home from home’ for families
Since the family have been supported by Children’s Hospices Across Scotland, they have been able to enjoy a more relaxed Christmas, particularly last year after spending time at CHAS’ Rachel House in Kinross.
Charlotte said: “At Rachel House, Christmas begins on 1 December so, whenever you go there during the month, it’s already Christmas.
“We stayed there for the first week in December last year and the tree was up and there were lots of festive activities going on. Rachel House is a lovely place at any time of the year but at Christmas it’s that extra bit special.”
Rachel House is a ‘home from home’ for families, with a range of facilities, including a hydrotherapy room, large accessible garden and lots of areas for relaxing and fun.
Charlotte said: “There are lots of things for the children to get involved with. They have outdoor play equipment, including a wheelchair-accessible swing, which Iona loves. Taking a child to a play park is something other people take for granted but it’s not something we can do.
Rachel House and the CHAS at Home service – which provides care between hospice visits for families who live in isolated areas – have both been a lifeline for Charlotte and husband Dave, 37, who works in the oil industry.
Charlotte added: “If you’ve got a child with a condition, you can’t just find a local babysitter for the night. Even trying to find carers can be difficult when you’ve got a complex needs child. CHAS have been amazing – we know we can trust them and that the kids will be fine. If there are any problems, they’ll phone us.
“The staff take over all of the children’s medical care so Dave and I get to do normal parenting things or relax as a couple again. We can go out for a meal or go to the cinema and just spend some time together just the two of us.
“When we went to Rachel House last year, it was the first time I didn’t have to get up in the night for the children. It was very strange having a full night’s sleep. CHAS allows us to recharge our batteries.”
*Give a family like the James-Bruce family the best present of all this Christmas, precious time together. Donate to CHAS by clicking here or call 0141 779 6180.