Christmas has to be extra special with our kids... It could be their last
Most mums and dads do whatever they can to make sure Christmas really is the most wonderful time of the year for their kids.
But, knowing it could be the last one they spend together as a family, means it’s always extra special for Charlotte and Dave James-Bruce.
Their children, Findlay, nine, and Iona, seven, both have an extremely rare chromosome deletion condition, which causes several health issues.
They have low muscle tone, so 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, with Iona even spending her first Christmas in hospital.
Charlotte, 32, said: “The children can have good days and they can have really bad days. It’s quite variable.
“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.
“We’ve also had several Christmases in hospital. Iona’s first Christmas was in hospital because she was born in the June but didn’t get home until she was about 11 months old.
“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 very ill.
“You never know what’s around the corner.”
For the last 18 months, the family have had additional support thanks to Children’s Hospices Across Scotland, which meant there was even more comfort and joy last Christmas after spending time at CHAS’s Rachel House in Kinross.
Charlotte said: “At Rachel House, Christmas begins on December 1, 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.
“We also had a trip to the Edinburgh Christmas market, which the children loved. Rachel House is a lovely place at any time of the year but at Christmas it’s always that extra bit special.”
Rachel House is described as 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 added: “It’s a really nice place — it’s fun and not depressing at all.
“There are lots of things for the kids 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.
“However, when we go to Rachel House, the children can just do normal things because everything is adapted.
“We’ve also met a few families there and it’s nice because everyone is in the same boat. Everyone just sort of gets it.”
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 for an oil company.
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.
“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.”