I’ve been privileged to spend time with the family. And I see, first hand, some of the challenges of sharing a living area with a child who has severe disabilities. I know what it’s like, for example, to discover late in the evening, that Amber-May has had an extremely runny tummy, the result of which has made its way into every crevice of her wheelchair and onto the new carpet! Cleaning Amber-May without getting more mess everywhere is challenging. Wheeling the wheelchair into the kitchen, leaving a little trail of devastation behind us, and cleaning it bit by complicated bit, is hard at any time, but harder still as the clock ticks relentlessly on to midnight and beyond. And then there’s the carpet!
A specially designed bedroom for Amber-May with a wet room attached, plus room for her equipment, would make it so much easier to care for her day by day – imagine being able to wheel her straight into the wet room, to be able to wash her easily, and then hose the chair down.
Not only that, but it would give all of them back the space they need to be a family, to have some privacy, to be able to relax, where the children can play without worrying about waking Amber May or tripping over equipment – the things so many of us take for granted.
We can’t take away the burden of responsibility they carry, but we can help to make it easier for them.