Brave, bruised, and better for it

With apologies for the spoiler, I can hardly believe it went without a hitch.

Back in the depths of winter, when Benjamin’s health appeared relatively stable, we rashly booked ourselves a summer holiday, more than two hours drive from our local hospital. Twelve hours drive and sixteen hours ferry away from our local hospital. Abroad! During May and June, as he deteriorated, it looked as if we would have to cut our losses and claim on the travel insurance. But, with almost three consecutive weeks of reasonable health under our belt, I nervously started to pack, whilst simultaneously trying to keep everything low-key and last-minute to avoid getting anyone’s hopes up.

Mostly, that is, the hopes of my six-year-old who’s learning French at school and was desperate to show it off: “I can do all the shopping, Mummy, you can just relax.” Because that’s all you do on holiday, right? Shopping and relaxing. My own hopes weren’t really that high to begin with, what with the twelve hours of driving, six of them on the wrong side of the road, the horrendous thought of a sixteen-hour crossing of the North Sea, the likely infestation of mosquitoes since we were camping right by a lake, the high chance of sunstroke, frostbite, drowning, or lightning strike, and the lack of an en suite toilet.

It’s hard work preparing and packing to take a family of five on holiday. By the time I’d arranged passports, warning triangle, vehicle clean-air certification, breathalysers, head-lamp stickers, GB sticker, maps, travel sickness pills, first aid kit, two weeks supplies of milk, containers, giving sets, bile bags, medications, nappies, wet wipes, incontinence pads, nebuliser, suction machine, feed pump, spare feed pump, sats machine, thermometer, electrical adaptors, clothes for everyone, toys for everyone, bedtime stories, surprise activities to keep everyone amused on the journey, snacks, directions to every hospital between here and Le Mans, a French translation of Benjamin’s medical notes, insect repellent, sun cream, blankets, waterproofs, swimwear, and cuddly toys, I was seriously wondering if it was really all worth it.

It was so worth it.

For me, there was a lot riding on this. Following three years of in-out hospital admissions, disrupting the lifestyle and opportunities of Benjamin’s sisters, this was my first chance to prove that we can give them a semblance of a normal life. To answer the detractors who said we should abort Benjamin for the sake of the rest of the family. And those who said we’d never make it work with three children. To show that we can all – including Benjamin – have fun times and a decent quality of life. To show that our little family works, plays, and stays together. I was determined to make it work.

My aspirations were given a massive boost by the wonderful staff of the P&O Hull-Zeebrugge overnight ferry. All we had to do was pop our hazard-lights on, and we were directed to a parking space right by the lift, and met by a lovely lady who took charge of Benjamin, leaving us enough hands to manage the girls and the luggage. The same lady seemed to be on hand throughout the entire voyage, always keeping a friendly eye out to make sure we were staying safe and having fun.

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“Nice bed, Mummy, but where’s the boat?”

Our club-class cabin was amazing! A cold beer from the minibar helped my husband get over his initial panic that we had only three beds (I quickly pulled down the upper bunks that had been stowed against the wall, and the girls just as quickly clambered up and got into their pyjamas, so exciting was the prospect of a bunk at sea). Once we’d coaxed the girls back into their clothes we risked the terrifying prospect that is taking a wayward toddler out on deck, and watched the delights of Hull receding into the evening sun with a G&T before heading down for our all-you-can-eat buffet dinner (which in Jackie’s case consisted of rice, chips, naan bread, poppadum, a bread roll and a scoop of mashed potato – with ketchup, of course – just in case they don’t have carbs in France).

A full days’ drive down the motorway later (with copious stops for coffee, picnics, toilet trips and ice cream) and we arrived at Lac de Sillé, a forest campsite that somehow managed to be both on top of a hill and next to a beautiful lake. With the occasional exception (like our tent being on a wooden platform up some wooden steps, making it somewhat difficult to wheel Benjamin into it), the campsite setup also made life very easy. There were real beds, decent toilets and showers, a fridge, a pastry delivery every morning, a pizza van every evening, draft beer, and plenty of fun atmosphere thanks to the World Cup!

I’d love to say I’d planned it ‘just so,’ but it was pure luck that made it the perfect holiday for everyone. The site was so safe – and car-free – that the girls could have a real taste of freedom, pottering around the woods, building dens, playing tag in and out of the trees. Generally they played really nicely together, and even found novelty in helping with the washing up. They both got to stay up late enjoying the poolside World Cup parties, and as a consequence we mostly got a lie-in in the mornings.

Since we were in the right country at the right time, it would have been churlish to refuse my husband a day out at the Tour de France. And I got to visit local markets, photograph butterflies, and drink cheap wine to my heart’s content. Best of all, the lakeside ‘resort,’ about a mile’s walk away through the forest, had pedalos, ponies, pancakes, a little train and, for Benjy, a beach wheelchair! So many opportunities to spend ‘quality time’ with one another – in and out of the water. But most of the time, Jackie turned out to be right, was spent shopping. Particularly as the local supermarket contained possibly the most exciting invention of the century – an orange-squeezing, juice-making machine!

Of course there were moments of confusion – and not just involving the mythical motorway exit for the Le Mans by-pass. Caitlin had been so excited about going on a ferry – but once we were on board, the ferry was so big she couldn’t comprehend it and spent the entire journey asking plaintively “But where’s the boat?” There was the morning I got up last and emerged blearily to be informed excitedly, “We’re going to make bunting!” I somehow misheard. “You’re going to make pancakes?” Fortunately we had the ingredients for both bunting and pancakes. Win-win.

And of course it was hard to relax completely. What if Benjamin gets ill? Do we know how to call an ambulance, and how long would one take to come? Can we speak enough French to explain his condition and what he needs? What if some vital piece of equipment goes wrong, or we run out of milk or medications? It wasn’t until we were on the boat home that I really believed we might make it without a medical disaster.

And of course it was hard work. Constantly lifting a 25 kg boy and his 25 kg buggy in and out of the car, the tent, the back-breakingly low camp-bed, and the floor took its toll. Working through his morning and evening routines every day made me realise how much of the weight our wonderful carers take off back home. Remembering all his medications and equipment every time we went out, and working out how to use them away from our familiar set-up and in 30-degree heat, was mentally exhausting. It made me realise this is probably the last time we’ll be able to holiday like this – by next summer Benjamin will just be too heavy to manage without some concessions to accessibility. But, we are so lucky to have had such freedom for so long.

I was pushed way out of my comfort zone in many ways: keeping Benjamin safe in unfamiliar situations; speaking up to make my children’s needs understood – in French; driving a big car on the wrong side of the road; letting routines slip; letting things get dirty; using those hole-in-the-floor toilets! I learned that trying to economise on space by sharing a single tube of toothpaste is self-defeating. I learned that a car packed to the roof with milk and syringes on the way there = a car with plenty of space for nice French wine on the way home!

There was no infestation of mosquitoes. Nobody got (too) sunburnt, drowned, or was struck by lightning even in the dramatic thunderstorms we experienced for the first three days. It’s true there was no en suite toilet (at least, not until we got back on the ferry). But, we were blessed with totally awesome weather so we never had to traipse across the campsite in the rain. I know everywhere has had awesome weather this year, but still it felt like Someone was watching over us. When asked “Would you do it again then?” my answer has generally been, “Of course not, we’ve had all our luck now, something is bound to go wrong next time!” But maybe, maybe even if something does go wrong, I think we might just survive…

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Captain Endurance and the Imperturbable Girls

I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, but the whole Marvel Empire is largely a mystery to me.

However, I really don’t feel I’m missing out because I have daily contact with at least three superheroes of the absolute superest kind: my children.

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Leader of the gang, Benjamin, is ‘Captain Endurance’ because the number of unpleasant, frustrating, and downright tedious things he puts up with (and, often, sleeps through) without any fuss whatsoever is frankly astonishing.

He’s coped with four-hour seizures that were exhausting just to witness, not to mention the drugs needed to stop them – enough to put a horse to sleep. He’s undergone multiple surgeries under general anaesthetic. He tolerates being physically restrained for MRI scans, and multiple attempts to get a cannula into his veins at every hospital admission. Every few months a radiologist sticks a wire into his stomach and intestines, pulls out his feeding tube, and pushes a new one back in – a process that can take anything from ten minutes to four hours and generally makes Benjamin feel pretty sore and sick for a couple of days, not mention that the radiology suite requires a deep-clean afterwards to get the bile out of all the equipment.

Benjamin doesn’t complain at the worst pain of all – the application and subsequent removal of dressings each time his permanent IV port (he really is half-boy half-robot) is accessed, and that of the hyoscine patches that go behind his ear to reduce his dribbling. He is subjected to an unpleasant round of beating, shaking and squeezing going under the name of ‘chest physio’ twice daily (or more, if his little sister takes it upon herself to emulate the procedure).

At intervals throughout the day (up to half-hourly depending on how poorly he is), a catheter is forced down his nose and into his throat to suck out all the gunk that accumulates there – a procedure that must at the very least be uncomfortable if not distressing, yet Benjamin puts up with it; sometimes he even sleeps through it!

He’s on medications that can make you drowsy, medications that make you agitated, medications that taste horrible, smell horrible and drip all over his trousers. He’s fed nasty-smelling milk into his jejunum (the first part of the intestine) and is nil by mouth so he never experiences the sensation of food on his tongue or the satisfaction of a full stomach. From his vantage point in the kitchen he spends hours every day watching the rest of the family cook and eat meals, smelling curries bubbling, cakes baking, fish suppers fresh from the chippy, without ever getting to taste them himself. Yet he never seems to get frustrated or complain. Remarkably, neither do his wonderful carers who also arrive at tea-time yet aren’t allowed to partake.

However, this is preferable to what went before – months of being fed into his stomach only for the milk to reflux up his oesophagus and down into his lungs causing chronic chest problems. It’s also preferable to what went before that – a constant barrage of bottles and breasts trying to force milk of any kind into his undernourished little body, not being allowed to sleep for more than three hours at a timebefore another feed was due.

Then there’s the hours of waiting at out-patient appointments. There’s being weighed and measured and having the details of your bowel movements discussed in excruciating detail by your parents and a team of consultants and medical students. There’s sleeping constrained by a system of wedges that forces you to lie in a straight line no matter how much you want to curl up cosily in a ball. There’s never having shoes that fit, because by the time they’ve arrived from the Orthotics people you’ve inevitably grown out of them. There’s never having glasses that fit, because, well, no-one seems to be able to make glasses that fit you.

I think the thing that would frustrate me the most – although Benjamin bears it with beautiful grace – is never having control over even the minutiae of his own life. He is poked and prodded when he wants to sleep, and put to bed when he is not sleepy. He is constantly climbed on by his sisters, forced to watch their choice of programme on TV. He is cared for by carers he had no say in choosing (although he clearly loves them to bits), sent to respite when it suits the rest of the family, and generally surrounded by people with whom he can rarely communicate his desires. As yet, he shows no sign of annoyance at all the things he has to go through, no sign of frustration at the things he cannot do. I don’t know whether to wish for him to grow and develop to the point that he does get frustrated, or to want him to stay forever in a state of more-or-less blissful ignorance. And, since Benjamin’s condition has no overarching diagnosis and therefore no prognosis, I have no idea which scenario is more likely.

So yes, Benjamin is super-patient, super-tolerant, super-uncomplaining. He is Captain Endurance. He’s also super-amazing! Before he was born, it was predicted that he wouldn’t survive birth: he not only survived, he needed nothing more than a little rub to get him going, he registered the same APGAR score as his sisters, he spent zero time in the neonatal unit, and was discharged from hospital five days after he was born. It was predicted he would never be able to breastfeed and would need an NG-tube from day one: this superhero breastfed like a trooper until the age of 17 months. It was predicted he would be blind and would never recognise his family: Benjamin sees, recognises, tracks and smiles at the faces of people he knows and loves. Our little man works so, so hard to achieve every tiny milestone, superhero-style.

And is this a surprise? No, because Benjamin comes from a family of superheroes; just look at his sisters, ‘The Imperturbable Girls’! Among his little sister’s first words were ‘syringe’ and ‘suction.’ At the age of two, she can conduct a pretty rigorous round of chest physio when Benjy is least expecting it. At six, his elder sister can look after the little one when I need to look after Benjy; she fetches nappies and muslins, passes me the right size of suction catheter, and knows how to dial 999. Both accept uncomplainingly that they never get to travel further than Granny’s house, that sometimes we can’t go places that have too many steps or no suitable toilet; that we have strangers in our house every evening, that most school holidays will involve at least one long boring day playing on the iPad in A&E.

They put up with all of this because they don’t know anything different. Neither of them can remember a time before Benjamin. Neither of them has seen enough of other children’s home-lives to know that ours is unusual. They don’t know anything different – yet. Unlike Benjamin, they will definitely come to a point when they realise they are missing out. When they start to count the differences between their lives and their friends. Already, although they sleep through the ambulances arriving in the night, they remember for months the mornings that Benjamin wasn’t there when they woke up.

Having a ‘SWAN’ (Syndromes Without a Name; a child with a condition of unknown cause) for a brother will make this harder, as there is no easy explanation for any of us to fall back on. I can’t tell Benjamin’s sisters why he is like he is, and they can’t explain to their friends either. They live in a world of uncertainty because I can’t tell them what will happen tomorrow, next year, or in ten years’ time, for Benjamin or for them. So, imperturbable, yes; unaffected, no, and increasingly no as they get older.

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My superheroes in their super-mobile (and a half naked doll for some reason)

In many ways, caring for Benjamin is easy: it’s all practical stuff. I can lift him, bathe him, feed him, medicate him, clear his airways and time his seizures. I can call an ambulance when I know I’ve done all I can. All I can do for my girls is to try to provide them with the support they need when they might need it: their school teachers are aware, they are on the waiting list for our heavily-oversubscribed young carers’ group, I try to let them know they can talk to me about anything and I will do my best to make things right. Perhaps the best way I can help them is to build on their superhero abilities by making their superhero status super-cool! They are part of the SWAN club! They get to join SWAN days out, share SWAN balloons, wear funky hoodies in groovy colours, and meet other SWAN siblings with similar superpowers. And I know – along with their SWAN pals, they will grow up to be super-accepting, super-inclusive, super-tolerant, super-gentle, super-strong, and with a super sense of fairness and justice. True superheroes.

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As to Benjy, how will he grow up? Will he continue to push the boundaries of what is possible? Will he become a ‘SWAN graduate’ with a firm diagnosis? Will he join the ranks of SWAN angels gone far too soon but held forever in our hearts? Whatever happens, he’ll always be a superhero to us.

Friday 27 April is Undiagnosed Children’s Day 2018. Support the Superheroes: Text SWAN18 £3 (or any amount up to £10) to 70070. #UCDsuperhero

The long haul

The world is closing in around us. Around my son, his siblings, and me.

My children are all growing up so fast. I can hardly believe Benjamin is four – he’ll be starting school next year. My eldest is already a grown-up P1 girl and loving it. And my littlest is walking, running, and jumping with boundless energy. As a mother, I’m moving out of the cloistered new-born weeks for the final time. The world should be opening up with opportunities for all of us.

A three-year old boy, smiling, in a special needs buggy, wearing glasses, a woolly jumper and smart new blue boots with velcro straps

Pleased with his new shoes

Benjamin is doing spectacularly well. I won’t bore you any more with the medical interventions we’ve employed which have got us to this point. We’re just so chuffed to see him putting on weight, and length, and developing a personality (even if that is characterised by pretending to be asleep to get out of things he doesn’t want to do). I’ve had to ask for a new chair, a new stander, a new wheelchair, and new shoes – and I’m immensely grateful to have been supplied with these without question. He needs bigger nappies and that means a trip to Primark (no expense spared!) for bigger trousers. We are even starting to think about having to hoist him to protect our backs.

We’ve moved on from ‘He won’t survive his birth,’ and ‘He’ll likely not see his second birthday,’ through ‘He’ll be in and out of hospital until he’s five,’ to the gobsmacking (in a good way) pronouncement of our consultant last week: ‘He may well remain stable until he hits puberty.’ This is amazing! Every extra day with Benjamin is a bonus – so the prospect (fingers crossed, touch wood) of years more smiles and cuddles is just a dream come true. And this new-found, hard-earned, and still-surprising health should pave the way for him to get out and about in the world.

But. The world is closing in around us. Because the world isn’t built for us. Let me go back to the hoists. This might sound like a small change – but actually it’s a massive leap. The transition from lifting to hoisting is a tipping point. It marks the end of being able to take Benjamin anywhere, in a backpack, baby carrier, or buggy, to being limited to places that are wheelchair accessible and – if we stay for more than a few hours – have a bathroom with a bench and hoist. My mother-in-law has kindly invited us to holiday with them next summer – but by next summer I don’t even know what kind of accommodation we would be able to stay in. Certainly it won’t be long before we’ll have to pay over-the-odds for a wheelchair-adapted room or cottage.

Now toilets really aren’t the focus of this post, but they are a good marker of how inclusive and accessible our country really is: and there are only just over 1000 fully accessible Changing Places toilets that Benjamin can use in the UK (that’s roughly one every 90 square miles. That’s fewer than half the number of toilets in Wembley Stadium, as Our Inclusive Home so tellingly pointed out). Finally, thanks to the efforts of an incredibly dedicated band of campaigners, Changing Places did hit the mainstream news in recent weeks, and have been discussed everywhere from Facebook to the Houses of Parliament. But is this going to lead to change? Ikea and Wetherspoons are leading the way. Center Parcs are following suit. Yet most of the major supermarkets, cinemas, and department stores couldn’t give a ****, or so it seems.

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Getting out and about

So, the world is closing in around us, because if we want to go out with Benjamin we are very soon going to be limited to those 1000-odd places, including Ikea and Wetherspoons of course, so at least we can get a beer and some ödmjuk… Soon, our children’s grandparents are going to have to come to us if they want to see us, because we won’t be able to get Benjamin into their houses. I can’t imagine we’ll be able to camp for much longer. The number of friends we’ll be able to visit will become vanishingly small. I won’t be able to take Benjamin to try on those trousers in Primark, or to the cinema, on a long train journey, or to the zoo.

I’m readjusting my already readjusted life plan. In good ways – thinking about where Benjamin will go to secondary school – and in ways I’m not so sure about, like installing a modern wet-room in our characterful Victorian house, like wondering whether I’ll ever, realistically, go back to travelling the world for work. And I’m readjusting for my daughters too. I need to get them used to the long-term idea of having a disabled brother. Undoubtedly they will miss out on childhood activities – holidays abroad, camping trips, family hikes, even family days out on our local beach. Will Benjamin become a millstone around their necks when I am gone?

I have so many questions now. How will society treat Benjamin when he’s no longer a cute little boy, when he’s a hairy, hormonal teenager, or a grumpy old man? What on earth will he do all day when he leaves formal education? How much of an environmental impact do decades of disposable nappies have and is it worth fighting for an alternative? Will he get PIP when he turns 16? And, what if I die before him?

I don’t have the answers. I do know that these are not really questions about Benjamin but questions about society. Any problems we might face over the coming years are not because of Benjamin and his disabilities, but because we live in a world that values profit and popularity over people, that pays lip-service to equality but neglects to make reasonable adjustments towards inclusion, that celebrates diversity but assumes the only purpose of prenatal testing is to facilitate the eradication of ‘diseases’ such as Downs Syndrome.

To those who would say, ‘We warned you. You asked for this. You knew at 38 weeks what was coming. You had the chance to avoid all this so don’t come running to us complaining about the impact on your daughters and asking for a bench and hoist….’ No. NO. The value of my son’s life has nothing to do with the impact he has on anyone else’s. Nothing, nada, zilch. However many days, weeks, years we are blessed with, his life is 100% worthwhile. He has a right to life and a right to live life to the full, and it’s up to us – all of us – to make it work.

A four-year old boy, beaming, wearing a silly hat and surrounded by balloons that say '4'

Here’s to the next four years and beyond

Portrait of a three-year-old boy squashed into a brown corduroy coat and woolly bobble hat, looking grumpy

But do I have to go out when it’s snowing, mum?

So if I’m going to have to write a few more letters (Fort Kinnaird, Edinburgh Zoo, Dobbies, you’ll be hearing from me again), if I’m going to have to host a few more Christmas dinners rather than travelling to others’, if my daughters are going to learn first-hand the value of neuro-diversity instead of biodiversity, sobeit. We are, a thousand times over, the fortunate ones. We have three beautiful children, and the longer we get to spend in their presence the more blessed we are. I will cherish every minute, be grateful for every day, and fight for everything that is right. We’re in it for the long haul.