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 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.

DSC_0000_BURST20180418132008808.JPGAs 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

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Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin.

I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say ‘minibreak’? A few bags slung into the boot along with sledges just on the off-chance – no squeezing in of feeding supplies, nebulisers, and suction catheters around the wheelchair. We stayed in a simple family hotel room – no phoning round for hours to find anywhere with a wheelchair accessible room that would sleep five (actually, I did phone around for hours before I remembered that, this time, Benjy wasn’t coming with us. Doh.).

But for me it was far from normal. My normal is with Benjy, and Benjy was away having his own holiday. We are fortunate to have access to a specialised, nurse-led, NHS children’s respite service, the kind of service that is under great threat in many parts of the country. We are grateful they can accommodate Benjamin for a weekend once a month – enough time for us to really make time for the girls. We are thankful that the staff have worked with us to get to know Benjamin well enough that we can entrust him to them.

But still, I’m torn. I don’t want to move too fast. We could have flown to New York for the weekend! But no, take it slow, baby steps, for all of us but mostly, if I’m honest, for me. So Aberdeen was a test run, somewhere we could get back from within a few hours at any time of the day or night. A test run for the logistics, yes, but also a test run for the emotions.

A six year old girl in snow-gear, arms outstretched, standing on a rock on a snowy hill

On top of the world (or a small hill in Aberdeenshire)

Sure, it was simpler and easier. Sure we could do things – like visit friends with inaccessible houses, like climb a snowy hill, like stay out later than usual – that we can’t do with Benjamin. The girls had a ball, singing songs in the car, playing in the snow, exploring the hotel, ransacking the snacks, a longer bath and a later bedtime. I can’t say we got any more sleep than we do at home – two excited girls and a late night in one room doesn’t compute. Add to that all the packing, and driving. It wasn’t exactly a rest, and it wasn’t a family holiday – how could it be, without Benjamin?

Sure, Benjy doesn’t seem to miss us. He enjoys the attention and the activities and the lovely lady nurses! But does he realise? Does he know that we’ve gone away without him? That we’re having family time without him, because it’s easier; because it’s too much trouble to take him with us? I wouldn’t dream of leaving his sisters with anyone else overnight at the age of four; how can I justify treating him differently? Especially when his needs are so great and his time with us may be short.

What if he gets sick and I’m not there to interpret how he’s feeling? What if the worst happens? Even if the worst doesn’t happen, we are all missing out on precious time with Benjamin. Will we regret these lost hours when there are no more hours with him to be had? Have I drunk in enough of him that I will remember his scent? The feel of his cheek? The little noises he makes when he senses I am near? Have I taken enough photos of his little freckled nose? Have I let his sisters have enough cuddles to last them a lifetime?

But his sisters can’t live their lives within an hour of the hospital. They can’t keep missing out just in case. They need to live now, experience the things their friends do now; they need Mummy and Daddy’s undivided attention, now. And I need time away from Benjamin to realise just how much I do miss him, to appreciate how much he means to me as a little boy, as my son, as my daughters’ sibling, rather than a patient and a full-time job.

So, hard though it is, it is good for us all to have this time apart. It wasn’t a family holiday and it wasn’t meant to be. All we can do is to make the most of our time away, to do things we can’t usually do, go places we can’t usually go, to spoil the girls and spoil each other, to try not to argue and try not to feel guilty if we do. And when we get back together, all we all want to do is hold Benjamin close, hug him tight, listen to his welcoming murmurs, kiss him gently, kiss him hard, hold him some more and appreciate being a family once again.

Postcode Lottery

I’ve always thought of myself as fortunate. Opportunities have landed in my path. My parents bought a house in the catchment area for a good school. My teachers saw to it that I got into a good university. That good education got me a job that I love. I have three beautiful children. My husband works hard so that I don’t have to choose between my career and spending time with my children. Childbirth aside, touch wood, I have never needed a night in hospital. I have not yet been reliant on benefits. We have been able to choose, get a mortgage for, and afford a deposit on, a perfect home in a stunning part of the world.

Benjamin looking contented, wearing a warm jacket in a SN buggy

Comfy in his new buggy

Now we have Benjamin, still, we are fortunate. The healthcare he receives is second-to-none. He gets all the therapy in the community that he needs. All the equipment that he requires is also provided (albeit a little slow to arrive at times). He attends a wonderful SEN nursery and will attend a wonderful SEN school. He has a dedicated pair of support workers who keep him safe (and give him many, many cuddles) whenever I am not with him. Social care-funded agency carers help us for six hours a week, Benjamin gets two nights a month in a specialist respite care unit, and we have the support of our children’s hospice whenever we need it. Benjamin gets disability living allowance, we have a car through Motability and a blue badge. Our house will soon be adapted to suit Benjamin’s needs and the local authority will fund 80% of the cheapest option as quoted by the cheapest supplier; moreover, the work will should be completed by the time we really need it! Yes, we had to fill out some forms and write some letters. Yes, we had to dig around to find out what we were entitled to and we had to fight a little to get some of that. Yes, once or twice I have had to write to my MP and the local paper. But, generally, we get what Benjamin needs and what we as a family need. We are indeed fortunate, or so I thought.

Benjy in his kitchen chair, with Caitlin sitting on his lap, her hand on his chest as if doing chest physio

Expert physio

Then, I started talking to other parents. Some families, in local authorities not too far away, get 12 hours nursing care a day. Some families get additional care in the school holidays. Some families received an automatic referral to psychological support to help them to deal with the trauma surrounding giving birth to a child with severe disabilities. Some families get twenty new syringes a day. Some families get liquid drugs so they don’t have to faff around crushing and grinding tablets to within an inch of their life to ensure they don’t block the feeding tube… I started to feel less fortunate. I started to feel jealous.

Then, I started talking to other parents. Some families’ only respite centre is being closed down. Some families have to self-fund essential equipment such as a suitable wheelchair. Some families can’t get a blue badge even though some days their child can’t get out of bed. Some families have to fight and fight and fight and go to court and pour every ounce of their energy and resources into fighting to get their child into a school that simply meets their needs. Some parents are forced to give up that battle, give up their career, and home-school their children. Some carers are carrying 50 kg children up and down stairs, or risking their backs lifting them into the bath because adaptations plans have stalled. Some families are crammed into a single room in a bed-and-breakfast because their local authority can’t find, won’t build, or refuse to adapt, a suitable property for their needs. Some children have seen half-a-dozen different paediatricians and never the same one twice. Some children have been discharged from all the services that might be able to help them. Some parents are accused of faking their child’s condition, or of poor parenting. Some are pushed so close to breaking point that they fear having their children taken away… Some families have their children taken away. I started to feel like the luckiest mother on earth. There, but for the grace of God, go I.

Why does it have to be like this?

Why do families at different ends of the same street, let alone different ends of the country, have to meet different criteria to get the same support? Why do families in very similar circumstances receive such vastly different levels of care (if any)? Why are we placed in these situations where we feel jealous, or guilty; where we have to compete? Why can’t there be a level playing field? Why isn’t access to support – health, education, social care, housing, advocacy – based on need and not on where you live, how deep you dig for information, how hard you’re prepared to fight, how well educated you are, who you know, who you can afford to employ, whether you are able to give up work, even whether you earn little enough to qualify for support (yes, it can work both ways)?

A circle of reusable nappies in a range of pastel shades

‘Why does it have to be like this?’ I asked Jenny Gilruth MSP at a recent round table discussion at the Scottish Parliament, Getting it Right for Parents of Children with Exceptional Healthcare Needs. She said I couldn’t expect everything to be centralised. But I’m not asking for provision to be centralised, I’m just asking for the rules, the criteria, the tick-boxes, the ‘decision making tools’ to be standardised. It could be as simple as saying ‘which area provides an example of good practice in terms of [insert essential service here]? Let’s employ their strategy across the board.’ How can it be so difficult to ensure, for example, that all children with continence needs should receive enough suitable continence products to meet their needs from the same age? Presently, some NHS boards provide pads from age three, others age five; some areas won’t supply pull-ups and others won’t supply cloth nappies; and some children get three pads per day while others get an unlimited supply. It should be as simple as every relevant organisation paying more than lip service to GIRFEC (Getting it Right for Every Child, in Scotland, or its English and Welsh equivalent Every Child Matters).

We might live at different ends of the country, but unlike some politicians, policymakers and bureaucrats, SEN parents do talk to each other. We know there are discrepancies, huge discrepancies. We share as much knowledge and as many tricks as we can to help each other out, to level the hideously uneven playing field we find ourselves on. We try to get around the borders that divide us and to fight as a team, while the system tries to make us compete to be the loudest voice clamouring for limited funding and limited support. We know it’s a postcode lottery, and we know it’s all our children that are losing out.

Lottery tickets, a pen, Euro notes and coins

Just a cold

The males in our household have been stricken with a cold. My husband has adopted the standard attitude of shuffling around the house looking sheepish, occasionally being wracked by paroxysms of coughing that needlessly shake his entire body, and ostentatiously ironing handkerchiefs and boiling kettles for uncertain purpose. This in itself is pretty hard work for the females of the family (with the exception of the guinea pigs who seem remarkably unbothered by the whole thing).

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No preschool today

Benjy, however, takes it to another level. It usually begins with a sudden dramatic increase in secretions (i.e., snot). During his morning physio routine, a white froth starts pouring from his nose. He’ll need suctioning every half an hour, day and night, rather than twice a day.

He’ll be uncomfortable – as you or I would be – but he cannot tell me so. Instead, his muscles will tense, he’ll be stiff, hot, jumpy and irritable, making me fear a seizure. He won’t sleep, and neither will I.

After a couple of days the secretions will thicken and he’ll wake choking in the middle of the night. This is the scariest time, frantically suctioning a frightened boy to clear enough of his airway so that he can breathe. His heart rate rockets and so does mine. I try to remember that, despite all his complex requirements and specialist equipment, Benjamin is still just a little boy with a cold. I give ibuprofen and Calpol, drop Olbas oil on his pillow and place bowls of steaming water in his room.

Then the wheezing starts – ‘viral induced wheeze’ they call it. Although his secretions are clearing, his oxygen levels are dropping. So it’s sixteen puffs of his salbutamol inhaler a day – twelve at scheduled times and four to keep in reserve for that middle-of-the-night panic.

A week in, and when most of us would be starting to get over it, the rest of his system starts to respond. This is what would have put us in hospital last year but now we are (hopefully) equipped to deal with it at home. With Benjy – and this is typical of jejunum-fed children, I’m assured by our patient specialist gastrointestinal nurse on the phone – his output of stomach juices and bile increases dramatically. So dramatically that they can’t all drain out into a bile-bag, but end up being vomited out of his mouth and nose. Now I know all our kids are superheroes, but sometimes I really wish Benjy’s superpower wasn’t firing green slime out of his nostrils onto his poor unsuspecting support worker…

IMG_20171220_221317_051.jpgWith the vomiting comes an increased risk that Benjamin will aspirate his stomach contents into his lungs and cause a chest infection. Our amazing team of ‘rapid response’ specialist respiratory physios come to the house to assess him and take swabs for analysis. We embark on a cause of strong antibiotics in addition to the prophylactic antibiotics that he is on permanently through the winter, just in case. We put Benjy to sleep on his side (worse for his back, better for his lungs). I ‘sleep’ with the video-monitor inches from my face, ready to leap up when I hear him cough. I wonder how we’ll manage in the New Year when we move him to a downstairs room.

The antibiotics have their usual effect of (without going into too much detail here) producing nappies that require an entire change of clothes, several times a day. I resort to sitting him on an incontinence pad to save washing his chair, car seat, or buggy. And I double his daily dose of Imodium. But he goes 48 hrs between bile-vomits, which is an improvement. We feel safe to send him to our wonderful NHS respite centre for a couple of nights. I feel glad they will be dealing with the nappies. I keep my fingers crossed they don’t panic and send him to the hospital.

I don’t know how much it has cost the NHS to see Benjamin through one simple cold – providing us with a sats monitor, suction machine, catheters, nebulisers, inhalers, medications; giving us the expert assistance of doctors, pharmacists, nurses and physios. I know it’s cost our family about a fortnight’s sleep, two swimming lessons, one meeting about Changing Places toilets and a whole lot of Christmas shopping.

But for all of us, this is infinitely better than having Benjamin in hospital, splitting our family up and putting him at risk of catching all manner of other winter bugs. I’m proud of what we’ve achieved, and I’m grateful for the equipment and training we’ve been given and the trust that has been placed in us, to keep Benjamin safe at home. Team Benjamin has risen to the challenge, so far.

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On the mend

What should a four year old be?

At four, Benjamin should be a cute, tousle-headed, tearaway by now. In and out of the paddling pool all summer; under my feet all winter. Chattering nineteen to the dozen. Learning to pee on a ping-pong ball. Spoiling his big sister’s games, and being too rough with his little sister. Big enough to be making his own way at preschool; still just little enough to creep into my bed for cuddles. Except, according to the doctors’ first predictions, he shouldn’t even be here at all.

I wonder what Benjamin would say about what he should be?

“Well mum, I am definitely tousle-headed and I’m totally cute – and don’t I know it? You can see I’ve got an eye for the ladies, brunettes in particular. I give them a wink, a sideways glance and that lopsided smile and they’re smitten. But if you’re there, mum, I’ve only got eyes for you.

“And I do love the water. I might not be in and out of the paddling pool but I love it when you trickle the bathwater over my chest. It’s a rare treat that we go swimming – but when we do I can stretch out my stiff muscles like nowhere else. Please take me more? I know you’re nervous that you can’t support my head. But I trust you. Trust me? I’m lighter in the water and you might feel stronger if you try it.

“I know I’m under your feet all the time. My chair, with its sticky-out wheels and sticky-outer handle. My medicines, with their sticky drips everywhere. My tubes and wires, always getting tangled and caught up. I know it takes you longer to do everything, because you can’t just potter around the house, you have to take me with you, moving me from room to room, chair to chair. Your constant shadow. I love to be your shadow. I love to watch you work, listen to you hum along to the radio. I love it when you let yourself have a little dance. I wish you would dance more (although I wish we didn’t have to listen to Radio 2 all the time).

“I might not chatter but you understand me, mum, even though I don’t talk or even make baby noises. You know when my body language says I’m uncomfortable. You know when something has caught my eye. You know when I’m tired. I wish you would trust yourself more because you know. You’re my voice, mum. I know you’re tired of advocating, questioning, pestering, and fighting. I feel bad, mum, that you have to do all that for me. But I know you wouldn’t have it any other way. I know, when you’re in the mood, you love a good fight against the world.

“I know I’ll always depend on you to change my nappies, to feed me, dress me, bathe me, to make sure I get the right medicines at the right time, to do my physio and to clear out my lungs when I can’t cough for myself. Sometimes you just get on with it, silently: I’m just another task that has to be done. Sometimes you linger over it, taking the time to kiss my eyelids, to massage my feet. To drink in my special scent. I drink in yours too. You are my world.

“I love my sisters. I know each of them by sight, sound and scent. I hope they don’t resent me. I know that by my very existence I spoil more than just their games. I cherish the times when they come to me, lay their heads on my chest, and kiss me. But I love just to watch them too. They are so colourful, so shiny, so busy. I’m never bored when I am with them. I light up when Jackie gets home from school, or Caitlin wakes up from her nap.

“I hope you’re proud of me, mum. I work so hard. I know you are proud of me. I hear you tell people over and over again how good I am at holding my head up now. How I can look to the left and hold it. How I wave hello (but only you know that’s what I’m doing). I hope you know, mum, that at the end of a therapy session, when I’m so exhausted all I can do is dribble, that I’m proud of myself too.

“I know you’re scared to let me go to preschool, mum. You think ‘They won’t know him like I do. They won’t keep him safe. What if something happens?’ But I’m four now; within a year I’ll be at school. And we both need some space, mum, and you will feel less guilty about skipping my therapy if I’m getting it there too. I hope that might mean you have more time for cuddles. Because even though I can’t creep into your bed, I live for your cuddles. When my whole body is tense and fighting against itself, in your arms I relax. When you stroke my hair I feel special. When you rub my feet I feel like you and I are the only people on earth.

“I know this wasn’t in your plan, mum. But when does life ever go exactly to plan? Especially when you bring children into the mix. All I can do is live from day to day and I wish sometimes you would too; maybe then you would worry less, dance with me more, and cuddle me tighter.”

Four years of teaching from you, Benjy and I’ve still a lot to learn. Big cuddles from mummy on your birthday xxx

An earlier version of this article was highly commended in the Carers UK Creative Writing Competition 2017.

In the shadow of Storm Brian

“You on your own then?” (I hasten to add this isn’t a #metoo story; this was a genuine expression of surprise/concern).

“Well my husband will be here soon [before it bloody rains, selfish ****]. He’s cycling from Scotland.”

“Ah (eyeing the back end of a five year old that has already spotted a rabbit and is disappearing across the caravan park at the speed of light). He knows which side his bread’s buttered.”

“Well there wasn’t really room in the car for him anyway, what with all the medical equipment, and, erm, children. And wine.”

“Aye. I can see who wears the trousers in your house.”

And with that, the master of metaphor sauntered off to show me the only island of grass that was suitable for tents (i.e., not under water) in this ridiculously late part of the season. Is the end of October even in ‘the season’?

Once I had unloaded the boot, laid the tent out, and fed the girls an entire week’s ration of Quavers in a vain attempt to stop them walking goose shit into the car, said husband did arrive.

“How was your journey?” I asked. “Bit of a head wind. I can recommend the cake at the Chain Bridge Honey Farm.” Cake? You stopped for cake and left me here with three kids singing ‘the baby’s done a poo, the baby’s done a poo’ (thanks Nick Cope, we do all love you really) and a pile of goose shit, waiting for Storm Brian (a fitting name for Britain’s answer to Hurricane Ophelia) to piss all over us? AND you expect a space in the car on the way home??

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Nice weather for ducks

Miraculously, we got the tent up before the night’s deluge hit. Miraculously we cooked up pasta and reheated Bolognese sauce without setting fire to the tent, and fed it to the children without spilling too much onto the pristine (ha! Of course we didn’t clean the tent before putting it away last time – it took us a fortnight just to get it dry) groundsheet.

After tea we got Benjamin ensconced in his mound of pillows and snuggled in his sleeping bag with a few blankets thrown in for good measure (think ‘The Princess and the Pea’ but with an inco-pad and a bobble hat on) and then the two still very excited girls snuggled into their sleeping bags. One of the advantages of camping at this time of year is it’s at least dark when you put the children to bed so there’s more of a chance of them sleeping. On the other hand, if one of them decides to play boobie-tennis and sing Old MacDonald all night long it can seem like a VERY long night. Time to grab a quick shower before the party…

_20171102_223107.JPGYou know you’re in for a treat when the campsite bathroom comes fully equipped with a mop and a bucket of stinking water… Actually the showers were wonderfully hot and remarkably clean and despite the lack of any form of screen or curtain only a small river escaped into the rest of the room. Which I managed to drop my pants in. Every. Single. Time.

“How did you get on last night?” asked the site manager (somewhat smugly, I thought). “We all stayed dry!” I said, thinking this was quite an achievement given the torrential downpour that had lasted all night (and omitting to mention my pants). And certainly an improvement on our first night here last year… “Forecast has changed,” he smirked, “Storm Brian’s been delayed until today.”

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Storm Brian has been delayed…

I hurriedly put the kettle on for what might be our last cuppa before the Great Flood. Then followed the usual debate: “How can a kettle take this long to boil?” “We can’t be running out of gas already?” Gives gas canister a shake. “How do you tell if a gas canister is getting empty?” “Weigh it.” “We haven’t got any scales.” “Maybe it’s just too windy.” “Maybe you filled the kettle too full.” Kettle eventually boils and we are none the wiser as to why it takes so long to do so when camping, but the gas canister never appears to quite run out.

Children washed and tea drunk, we embarked on our ‘holiday activities’. As the days passed and the mud deepened, the site owner strove to prevent anyone getting their vehicles stuck, by parking increasing numbers of caravans over the roughest parts. I understand the intention, but the result was that we had to drive – slowly enough not to hit any of the protruding parts of said caravans, yet fast enough not to get stuck in the mud – in an increasingly complex set of manoeuvres like something out of the computer game Worm, where you end up going round in ever tighter circles until you run into your own tail.

But with a bit of perseverance, a bit of swearing, and some very muddy feet we managed to get out and about. Our first place of shelter was Barter Books. After we’d mistakenly followed Google into an industrial estate and turned around in Aldi then again in a carpet warehouse, we finally found our way into this warren of a secondhand bookshop in the impressive old station building at Alnick. We had a fantastic lunch in the ‘station buffet’ (I don’t know many station buffets that do thrice-cooked chips) and then the girls and Daddy went book shopping while Benjy and I sat by the fire . Caitlin was enthralled by the model railway running around at ceiling height, playing peekaboo between the bookshelves. And my husband bought himself a tea towel, so everyone was happy.

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Budding train drivers in Barter Books

On Day Three we discovered the delights of driving to a beautiful beach and sitting in a nice warm car with the radio on drinking coffee and eating brownies / licking an enormous lurid green ice cream with a flake in it (natch), according to taste, with big thanks to Benjy and Caitlin for falling asleep on the way and giving us an excuse for such behaviour. Eventually we braved the beach, and the winds, and despite Jackie’s initial uncertainty that her ears would stay attached to her head, we were rewarded with a simply breathtaking view and plenty of mud to play in.

Back in the shelter of the campsite we had half an hour or so before tea to indulge the girls in stalking some wildlife, and to indulge ourselves in the cuteness that is a toddler starting to speak in sentences. “Wabbits!” “Wheredawabbits?” “Wabbitshere!” “Wabbits!” “WabbitsHERE!” “Mama, WABBITSHERE!” … “Wabbitsgone…” sniff… “Wabbitsawgone”. Teatime girls. “No. NO. WudgafudgaWABBITS.”

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Stalking wabbits

On Day Four we were joined by an old friend and his daughter. Having as usual forgotten how ridiculously busy England can be on a sunny (if very breezy with a threat of rain later) weekend in the school holidays, we cheerfully set off for the picturesque village of Low-Newton-by-the-Sea. Selected by my husband on the grounds of its ‘wheelchair accessible nature trails,’ it was only when we passed a sign advertising The Ship Inn and Brewery that I realised the true reason we were visiting. Nonetheless it was a very picturesque village with a very picturesque pub serving very lovely food including some thoughtful children’s options. I slightly marred the picturesqueness for everyone else by changing Benjamin’s nappy on the village green, but you can hardly expect a cramped mediaeval pub at the end of a dead-end road on the Northumberland coast to have a Changing Place…

We did manage a stroll through the nature reserve, my husband and our friend taking the girls further along a rather less-than-accessible path to the beach whilst Benjy and I sheltered in a hide and did his physio. The hide was decorated with statistics of bird sightings and identification charts for everything from a wren to a golden eagle, but we managed a sum total of a solitary black-headed gull (everything else presumably still sheltering from Storm Brian).

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Really not into birdwatching

Storm Brian having finally passed, although I’m not sure exactly which portion of the wind and rain could be attributed to him, and left colder air in its wake, our final night in the tent was spent frantically trying to keep warm, and frantically checking that the sleeping children were warm enough, without cooling them down by opening their sleeping bags (not a problem for the girls because they always manage to kick their sleeping bags off anyway, much as they do our duvet when sharing our bed back home).

We gave up on our usual sophisticated evening routine of sitting in the dark drinking wine out of plastic mugs and eating salt and vinegar crisps, because the groundsheet was just too cold to sit on, and retired to our sleeping bags. Five minutes after my husband had fallen asleep next to his whisky, Caitlin awoke demanding milk. It was impossible to fit both her and me into my sleeping bag, so we spent the night squirming underneath it, with either my bottom or hers sticking out into the cold night air depending on which breast she was attached to. Suffice it to say, if that had been the first night and not the last, there would have been no nights two, three or four. But at least it justified the number of blankets and woolly hats I had packed.

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After a breakfast of instant noodles and leftover cake, our wonderful friend took the girls on an ‘adventure’ (i.e., another wabbit-hunt) to enable us to pack up (i.e., argue) in relative peace. If anyone has invented a method to remove all the contents from a tent, pack the tent up, and stow the tent in the bottom of the car boot underneath all the other contents, in the rain, without everything getting soaking wet in the process, please let me know. However, thanks to the fact that we are now experienced campers (having been twice this year), said watering of all our equipment was achieved in double-quick time and we even found room – and the good grace – to fit my husband in the car on the way home. As Bugs Bunny himself would say, “That’s all folks.” Until next year.

Festival spirit

Yesterday, I took the two little ones to a festival – Daytripper – on my own. It’s not the sort of thing I would normally do. I’m not great at mixing with people I don’t know, or don’t know well. It’s in a crowd that I feel loneliest and most conspicuous. And with an energetic toddler and Benjamin, with his tube and his bile-bag and his suction pump I was sure going to be conspicuous. And without my chatty biggest girl and my husband I was sure going to be lonely.

Ric and Jackie were away camping (with his best mate and her best mate and our car and a bottle of whisky), and this festival only comes around once a year, and it is only two minutes from our house. So my options were to sit around the house listening to it from outside, or go and join in the fun: try not to worry about the routine of medications and feeds and physio and do something ‘normal’ families do.

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The children were both totally up for it

Maybe I’m over-egging it a bit: it wasn’t exactly Glastonbury – it wasn’t even an overnight thing. It was a few bands I have to admit I hadn’t heard of, in a small park with only one entrance for Caitlin to escape out of. The sun was even shining and the loos were cleanish (even if I couldn’t get the buggy through the door). And, as I said, it was literally two minutes’ walk from our house.

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Mummy, why is the sky that funny blue colour?

I did find it a bit difficult to mix at first – but mostly because I had to keep breaking off from conversations to chase Caitlin, or to move Benjamin into or out of the sun as I fretted whether he was getting too hot or too cold. But Caitlin made friends with a little boy through the medium of bubbles, so I braved the bar for another sort of bubbles…

…and as the sun went down and the pyrotechnics (really!) came on, we all drew closer to the stage and I found myself drawn into a friendly crowd of local mums, dads and neighbours. The music was great, the pizza was yummy (if a little grass-covered after Caitlin had finished with it), Benjamin enjoyed the lights and the music, and Caitlin stayed within sight most of the time, primarily because she didn’t want to move too far from the donut stall. We stayed out almost to the end – well past the children’s bedtime if not mine – and listened to the last couple of songs on the way home. I even managed to get both children to sleep after all that excitement – in time to reward myself with a shower and another (small) glass of wine.

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Grass-cuttings with your pizza, anyone?

So were we conspicuous? Well, maybe – but certainly no more so than the 87-year-old who was dancing with anyone and everyone and enjoying every minute of it. Yes, it was tricky managing tube-feeds and nappies without getting everything contaminated with crazy-string, but no-one else seemed to bat an eyelid. Yes, a little girl came up and asked questions about Benjy (much to her mum’s consternation) but not in a fearful or critical kind of a way, just out of innocent interest. Yes, Caitlin did repeatedly make off someone else’s football but, well, I just pretended she wasn’t anything to do with me!

And was I lonely? Well, of course it felt strange being there without my husband to hold, and without my biggest girl to indulge (we brought an Elsa balloon home for her) but really I was reminded how warm and welcoming this small town can be, if I only stop looking for problems and let it.

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Feeling the love

At the same time as I was dancing the afternoon away with my children, another SWAN family elsewhere in the country were visiting their music-loving little boy’s grave, leaving sunflowers in memory of his bright spirit, which passed just over a year ago. I honestly cannot imagine what that must feel like. To visit your own child’s grave. However hard it is – however hard – to care for Benjamin, to get out and about with Benjamin, to fight for what he needs and to do things that ‘normal’ families take for granted; it cannot ever be as hard as that.

So however conspicuous, lonely, difficult and downright different our life is, we need to make sure we keep on living every minute of it to the full. I will dance until I’m 87 if I can keep my loved ones dancing with me. I certainly intend to be dancing at Daytripper 2018.