“And now, here’s an SOS message for Mrs Alexandra Davey, currently thought to be travelling in the Skye area: could you please come back down to earth as your son, Benjamin, is severely disabled.”
At home, we get used to it, we get on with it. We grow blind to the house full of equipment that makes daily life possible. We settle in to the well-oiled routine that makes things, if not easy, well, manageable.
On holiday, all that is stripped away and we come back down to earth with a bump.
It’s the simple things that become difficult. How can he sleep safely without his system of supports and his tilting bed? I have to shove a pile of pillows under the mattress, more pillows around him, then check numerous times a night that he hasn’t slid underneath them and suffocated.
How can he sit safely and comfortably? At home we have a different special supportive chair for him in every room, and one for the garden. Here, he’s lying on the sofa, his body contorted into strange positions, or sat in his wheelchair from dawn to dusk, the only place he’s really secure.
Bathing him is a challenge – getting his 13 kilos from chair to a changing mat on the floor, up into the bath and then, now cold and slippery, back to a towel on the floor to be dried. When we stop in hostels with shared showers in a cold cubicle down the corridor, Benjy gets a no more than a quick wipe-down with a flannel in the bedroom.
Without a schedule it’s so easy to lose track of tube-feeds and medications. Without our usual system of bottles and bowls it’s hard to keep a supply of clean syringes and cooled boiled water.
I spend nights sitting up in cold rooms checking his temperature and piling on blankets – if he gets cold he can stay cold for days.
He spends days sitting in his car seat while the rest of the family leap out to look at a view, go for a pee, shop for dinner, take a photo. He doesn’t feature in many of our holiday snaps. Our four-year-old is having a whale of a time. Our two-month-old is charming people wherever we go. Benjy, he’s just there, looking back at me glumly in the rear view mirror.
More often than not we change his nappy in the boot of the car – he’s already above the weight limit of most baby change tables and ‘changing places’ or ‘space to change’ toilets are few and far between*. Disposable nappies leak.
Yet we start to adapt. We find that a snuggly dressing gown can make a lot of things more comfortable, that his three-wheeled chair copes better than our car in the snow. Propped up on the sofa with cushions he watches his sister cavort around the living room in her ‘Elsa’ dress and beams at the sun coming in through the picture windows. We manage a special family meal before the restaurant gets busy. We venture on a boat trip and he enjoys the feel of the sea wind on his cheeks. We discover that our eldest has a talent for photography (or at least enjoys taking Mummy’s camera and dangling it perilously near an icy puddle).
We meet people who will move mountains (okay, furniture) to help us get Benjy into their quirky pub-on-a-barge. We eat scones for breakfast, tapas for lunch, fish and chips from the chippy for tea. We make do with more cuddles and less therapy, more talking and less TV.
We get home, exhausted, relieved not to have run out of milk or medications, incredulous that we avoided a trip to A&E, exhilarated to have made the trek across the country and back, to have been out in shorts and out in blizzards, thankful to be back to our home comforts, more aware of how lucky we are to live in a country that provides Benjamin with all that he needs to make home comfortable … and planning to go camping next!
*Please do support these valuable campaigns to give disabled people the same right as everyone else – the right to use the toilet in safety and comfort.