Gone camping

Q. What do you do in the summer holidays if you have three children under five, one breastfeeding constantly, one addicted to cartoons, and one severely disabled?

A. Take them camping. No joke*.

So, we picked a week with a half-decent weather forecast, if not a decent health forecast (Benjamin had just started vomiting up alternate feeds, and all three children were likely incubating chicken pox) and booked a pitch at the only campsite in the UK that had any space and a more than two-star review of its toilet block. We prepared thoroughly by watching a YouTube video of a group of young, attractive people pitching our tent with ease.

Having planned the trip less than 24 hours in advance (because if I’d had 24 hours to think about it I’d have realised what a ridiculous idea it was), the car club estate car was already booked out to someone else, so we decided to go in convoy in two teeny tiny cars instead. Despite the lack of many essential camping items, both cars were filled to the roof with disability equipment, cuddly toys and emergency chocolate (mine) and whisky (his).

We drew lots and I got the car with the two smaller children, carrying with it a slightly higher risk of vomiting but a much lower likelihood of having to listen to The Little Mermaid audio CD non-stop for the duration of the journey. Since my two children were more likely to require emergency stops for cleaning purposes, this meant I was to lead the convoy. This in turn meant I was to navigate. Hence our first stop turned out to be ‘Heathery Tops Farm Cottages’ instead of ‘Go Outdoors Superstore Berwick-upon-Tweed,’ much to the bemusement of some dog-walkers who had to get off the road repeatedly as two cars drove past them twice, turned around, and drove past again without so much as stopping to look at Heathery Tops Farm Cottages.

Having finally made it to Go Outdoors, we purchased a hefty extension cable for hooking up to the campsite power supply, a fancy airbed and foot pump, a waterproof picnic blanket, a proper big camping stove, and a gas cylinder that didn’t fit the proper camping stove. These were crammed into the cars in such a way as to be guaranteed to fall out upon opening the doors, and we were on our way.

Bluebell Farm Campsite, Belford, didn’t seem to have any bluebells – or a farm – but it did have an abundance of rabbits, ducks, swans, pigeons and even an ostrich, a very friendly and helpful owner and, most importantly, a pub and a fish-and-chip shop on the doorstep.

dsc_1252.jpgPitching the tent didn’t seem quite as easy in a steady drizzle with two adults, one of them simultaneously breastfeeding, an overenthusiastic four-year old, and a crowd of ducks, as it looked on the sunny video, but we managed it before dark and headed off for a very late supper in the Black Swan. dsc_1294.jpgIt was well and truly dark by the time supper was over so we gave the kids a quick wipe over with a wet-wipe, put them to bed, all in a row, and congratulated ourselves on a job well done.

In the early hours of the morning, just as the drizzle turned to more persistent rain, I returned from taking Jackie to the toilet (Oh! The joys of camping) to find Ric staring at a puddle on the roof of the inner tent. The puddle quickly became a drip, and the drips quickly multiplied until it was clear that a couple of kids’ beach buckets and a few incontinence pads were not going to solve the problem. Since I was already damp from the aforementioned toilet trip, I headed off half-naked to fetch a small tarpaulin from the car, which I then attempted to drape over the tent. Fortunately the friendly and helpful (and now also bemused and amused) campsite man was up by this time, doing things with bins and tractors, and gave me a hand.

Over a reviving coffee (made on our old, tiny stove for which we did have a correct if nearly-empty gas cylinder), we debated whether to go home or go shopping. Rashly, I allowed Ric and Jackie to drive back to Go Outdoors (should totally have bought shares in them before we started…) while I stayed behind to mop up. They returned with a new tent (almost identical to the first and just as hard to put up, but a slightly less bilious shade of green and, being the ‘Deluxe’ model, waterproof), a new gas cylinder, and a towel shaped like a ladybird.

Thus Day Two of the expedition, which I’d intended to spend relaxing around the campsite toasting marshmallows and playing petanque, was spent pitching the Deluxe tent, transferring everything from the ‘Classic’ tent to the Deluxe, and taking down the old Classic (which was no easier than putting it up, and possibly wetter). On the plus side, we successfully attached the gas cylinder to the stove, cooked pasta without scalding ourselves, and even all had a decent wash.

On Day Three, we got cocky and decided to go on An Excursion To Holy Island. Which is reached by a single-track causeway only navigable at high tide, and to which everyone else in the northeast of England seems to go during the school holidays. With a frisson of excitement we checked the ‘safe crossing’ times and decided we’d be fine if we didn’t stop for lunch.

We had such a great time exploring the ruins, buying postcards and playing ‘spot the man dressed as a banana’ (a stag do? I have no idea) that we decided to stop for lunch.

Lunch over, we joined every man, woman and banana in the mad rush to get back to the car park and over the causeway before the tide came in and marooned us. Except unlike everyone else we did not just leap into our car and drive away, because in our haste to get into the car Benjamin’s gastrostomy button somehow got pulled out. As the contents of his last meal spurted all over the car park I realised we did not have any of the correct equipment with us to replace the button – and the button must be replaced as soon as possible to prevent the site closing up.

I like to think I could give MacGyver a run for his money, so with great agility I grabbed the car key (I really hope our community nurse isn’t reading this) and used it to open the valve in the button, allowing the water-filled balloon to empty and the button to be re-inserted into Benjamin’s stomach. Of course, without the water-filled balloon full of water there is then nothing to hold the button in place, so Ric then had to drive like lightning ahead of the racing tide, with me holding the button in place for dear life, to get back to the campsite and the correct size syringes…

…which were of course in the bin as I had helpfully used our only pair to change the water in the balloon that morning. So we swapped roles for a bit, Ric acting as button-securer while I fished around among the dirty nappies and empty pasta-sauce jars for the syringes (I really hope our community nurse isn’t reading this).

Syringes sterilised, button balloon refilled, children released from the car seats in which they had been imprisoned to prevent them interfering in our delicate operations, we breathed a sigh of relief. The final stage of replacing a gastrostomy button is a mere formality – drawing out a small amount of stomach contents to test that the button is actually in the correct place (i.e. the stomach) and it is safe to start feeding again. The idea is, that since stomach acid is, well, acid, a pH test should verify that the button is in the right place. The problem, with Benjamin, is that he is on a considerable amount of antacids so it is well-night impossible to get an acidic reading… Anyway, to prevent this becoming a long(er) medical saga, I will just say that four hours, several more pH tests, an hours’ drive in the direction of a non-existent A&E department at Berwick hospital, three frustrating phone calls to NHS Direct, and one simple phone call to a sensible nurse on Ward 4 at Edinburgh Sick Kids, we finally determined that the button was indeed in the correct place, gave Benjamin his long-awaited lunch, and headed to the Black Swan for a large G&T.

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Recovering with a biscuit

Was it on Day 3 or Day 4 that Jackie was swinging on a railing, fell off and cut her head open? Actually on closer inspection it was her ear she cut open which is probably less life-threatening but nonetheless there was a lot of screaming and gallons of some blood (enough to unnerve a mummy who has just found out there is no A&E department at Berwick) and she will now forever have a notch in her ear like a stray dog that’s been in a fight.

dsc_1295.jpg dsc_1306.jpgOn Day 4 we thought we’d rekindle the spirit of traditional British holidays and go for a picnic on the delightful (seriously) beach at Beadnell, so Jackie could go rockpooling. There weren’t really any rockpools but we found two snails and a small dead crab, took it in turns to eat sandy Scotch eggs and hold Caitlin who was screaming and would not be put down, then had to make a mad dash back to the car when the heavens opened. So I think we achieved ‘traditional British holiday’ pretty well. We finished off the day singing Christmas songs all the way back to the fish-and-chip shop.

And so we return, one new tent and a whole lot of sand heavier, all our chocolate and half a child’s ear lighter. On the plus side, the weather was on the whole good. Benjamin stayed stable and slept soundly in an improvised mound of pillows. Jackie failed to mention Peppa Pig for the whole trip. All the kids benefited from spending time together – I caught Benjy and Caitlin sneakily smiling at one another on more than one occasion. Nobody managed to sneak a rabbit into their luggage (so far as I know). I’ve learned never to go anywhere without a full set of equipment for inserting a gastrostomy button. And nobody came down with chicken pox until we got home.

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*Disclaimer so my mum doesn’t worry (too much): some elements of this narrative may have been exaggerated.

Holiday

“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.

Interlude

Apologies for the pause in transmission; we’ve been away on our summer holidays.

Ah, holidays: a time to relax, recover, enjoy each other’s company, refresh ourselves for the year ahead.

Agh, holidays: most stressful life-event after divorce, losing your job and moving house (joint, of course, with Christmas): travelling with small children – check; travelling with disabled child – check; getting through airport security with 200 ml bottles of milk, buggy, laptop, baby in sling, toilet-training toddler and cuddly monkey – check; flight delays – check; train delays – check; getting lost in industrial estate on outskirts of Pisa – check; spending a week with entire extended family-in-law – check, check, then check just what am I doing here?

Anyway, after frantically packing nappies, wipes, toys, medication, milk, sun cream, muslins, spare pants, more muslins, a few more wipes and even more spare pants into five bags that we can carry between us while still manhandling a buggy and a baby in a sling, we were off.

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We tried hard to relax, at least relax the rules: any meal could be replaced by ice cream, any meal could be accompanied by wine, bedtimes late, lie-ins later, creeping into mum and dad’s bed (even) more frequent than usual. Let Granny take the children for a while. Try not to let on that we know Granny let the toddler fall in the swimming pool…

But of course, in a new place, new worries emerge – the baby, for whatever reason (The heat? New surroundings? Breastmilk tasting vaguely of wine…) suffered terribly with increased muscle tone. That is, tensing up like an ironing-board all the time, making it incredibly difficult to feed him, hold him, or fold him in a buggy, and causing him to throw up more of the special new milk than he kept down. On the plus side, if he really was aware enough to notice his change in surroundings and react to it, then he’s taking in more than we realise.

The toddler, shunning all the old favourite toys and new, “keep still on the plane” bribery toys, developed a fierce attachment to a broom and feather-duster lurking in the corner of the apartment (two items I admit to not even owning, let alone using, at home). I wonder if her new-found talent for cleaning (or at least, moving dirt around) can be cultivated once we get back?

And as we started to unwind, new tensions were released. Realising we were arguing again, we took advantage of Granny day-care to have some time just the two of us – a rare treat – to walk and talk and work a few things out. It wasn’t easy, but I’m glad we did.

On the penultimate morning I woke before the others and for the first time felt energised enough to get out of bed. The sun was streaming in through the glass door (as I realised when I walked out naked into the hallway). The three people I love more than anything else in the world (four including the cuddly monkey) lay peacefully sleeping in a row. I pottered, did some laundry, laid breakfast and then, realising there were no more jobs to do, actually did relax, for the first time in a long time. Who knows what might have happened if we’d gone away for a fortnight.