Living with ‘life-limited’

**Trigger warning: child loss**

I think a lot about death. His death. They say he is ‘life-limited’ but they can’t tell us when the axe will fall.

Each time I kiss him goodnight, I wonder if it will be the last. Each time he stirs, I rush to see if he’s having a fit. When he’s quiet, I crane my ears to check he’s still breathing. If he’s breathing softly and regularly, I steal another kiss, to make sure he knows that I love him.

I think about what I would do if I were to get there in time. Run through CPR in my head; re-read the instructions on his rescue medication; check that the telephone is close to his room; worry about how long the ambulance will take to come.

I think about what will happen when the time comes. Will we have any warning? Will we be able to choose to take him home? Will it be peaceful? Or will it be a seizure? Will he be fighting for breath? If I know he’s gone would I wait, before I called anyone, just so I could keep him close a little while longer? I dream about post mortems, funerals, cremations, epitaphs. About sending back all his equipment. About all the forms there’ll be to fill in.

I think, guiltily, of how much easier our life would be without him. The places we could go, the things we could do, the fun we could have. I think, guiltily, of how much more difficult our life would be without him. No motability car, no carer’s allowance, no DLA. Of the doors he opens for us, the new friends he makes us, the insights he gives us.

I think of the hole he would leave.

I try to imagine his bedroom, empty; his toys, tidied away; his smile, stilled; his eyes, dulled. I think of the hole he would leave.

And I worry for my girls, each so different and so precious. So aware of life’s fragility, I spend too long Googling stories in the Mail about children who die from chickenpox or a sudden allergy to peanuts. My perfect three – how our family was meant to be. How could it possibly function without any one part?

I have too many friends who have lost, or are losing, a child. The special needs community suffers more than its fair share of tragedy. Each time, it feels simultaneously like a punch in the guts and another bullet dodged.

My fears paralyse me. How can I plan for a future that may not happen? How can I think about housing adaptations, about special needs schools? It’s hard even to do the therapies that will keep him strong and straight for future life. I just want to hold him close and show him how very, very much he is loved.

The thing about thinking about death is, it makes you appreciate life. Life in all its fleeting beauty. Life in all its rich variety. Life that is of value whether you are a world leader or a non-mobile, non-verbal, incontinent, visually-impaired, tube-fed, epileptic, heavily-medicated two-year-old.

And so I each day I massage his perfect, pink little toes. Each day I stroke his soft curls. Each day I just hold him, just lie with him, look into his eyes. Because every day is a bonus and each day is a gift.

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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.

Twenty-or-so shortcuts of a special needs mum

When we first had a child, I remember thinking Wow, what did I do with all my time before? Now we’ve got three, one with severe and complex needs, I wonder What did I do with all my time when I only had one child? Or two?

If there’s one thing most mums (and dads) – special needs or not – would probably agree on, it’s that children are like little black holes into which time just disappears. Whether you’re changing nappies, making three different meals for three picky eaters, breaking up arguments, trying to get them to sleep, trying to get them out of bed, trying to get them to wear something other than socks and a pair of fairy wings … and don’t get me started on the laundry … there are never enough hours in the day, and the to-do-list is invariably longer at the end of it than when you started.

So we all have our little shortcuts (successful or not) to try to sneak ourselves a few extra minutes here or there. Who hoovers under the sofa anyway?

  1. Dressing everyone in clothes you’ve just taken out of the tumble-dryer rather than putting them away (who cares if school phone social work because they think they’ve only got one outfit each);
  2. Checking the Met Office app hopefully for rain so you don’t have to put the washing out and can just bung it in the tumble dryer instead;
  3. Pegging the washing out loosely in the hope that it will blow away and you won’t have to iron it/fold it/put it away/bring it in in a hailstorm and find somewhere to hang it in a house already full of wet laundry (of course the nice lady next door always finds it under her car and then you have to wash it all over again);

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    Nothing I love more…

  4. Carrying a thirteen-kilo two-year-old for f***ing miles because at the start it seemed like it wasn’t very far and would be quicker than putting the f***ing special needs buggy together;
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    Who needs all these layers of security?

    Only doing up two of the three harnesses that come with said special needs buggy … later to find your child has slipped and got his head stuck under the armrest;

  6. Dissolving fourteen anti-reflux pills in water at the start of the week … only to find they’ve all turned to glue by the end of day one;
  7. Getting bloods done every time you’re at outpatients for an appointment, because you know if you don’t, some doctor will request them a few days later and you’ll have to make a special trip;
  8. Putting cotton wool/baby wipes down the loo because there’s no bin-liner in the bathroom bin (this one will always backfire eventually, probably when your very houseproud aunt is coming to visit);
  9. Putting Peppa Pig on YouTube, which advances automatically to the next video, instead of 5OD, which doesn’t … even though they will probably end up watching porn or one of those annoying robot versions of five little monkeys on b****y ChuChuTV;
  10. Watching CBeebies while ironing because you can’t be bothered to hunt for the remote control (and you quite like Mr Bloom anyway);
  11. Making them do the shopping is maybe a step too far though?

    Making them do the shopping is maybe a step too far though?

    Doing the weekly shop in the petrol station (bonus points if en route to A&E);

  12. Cutting the children’s hair short so you don’t have to do pigtails (or, God forbid, French pleats) before school;
  13. Hair by Mummy being really lazy

    Hair by “Mummy being really lazy”

    Letting the children’s hair grow long because it’s cute because taking them to the hairdresser is just too stressful (and cutting it yourself is even worse);

  14. Breastfeeding while doing the nursery run/queuing in A&E (actually quite proud of this trick);
  15. Reading only the first and last sentence on each page of the bedtime story (they always notice, usually at the last page so you have to read the whole thing again);
  16. Letting everyone in the house sleep in your bed, just so that everyone, well, sleeps;dsc_0772.jpg
  17. Taking the children’s best paintings out of the ‘keeping box’ to make emergency birthday cards;
  18. Taking the children’s second-best paintings out of the keeping box for emergency wrapping paper;
  19. Eating a whole family-sized bag of crisps yourself to save looking for one of those clippy-things to seal it with;
  20. Eating the rest of the ice cream instead of trying to find the mystery space in the freezer it came out of;
  21. Drinking wine even though you’d prefer G&T, because it only involves opening one bottle instead of two and you don’t have to faff around with cucumber to do it properly. Note to self: getting those pre-mixed cans of G&T is a big mistake, they are sneakily strong and result in falling over whilst ironing to Mr Bloom and/or eating a family-sized bag of crisps…
Two in a swing saves on pushing time...

Two in a swing saves on pushing time…

...although getting them to do the pushing is even better

…although getting them to do the pushing is even better

Responsibility

If you’re a parent, you may remember that feeling of arriving home from the hospital, putting baby in his/her car seat down in the middle of the room, and realising, Shit, I’ve got to keep this thing alive. With Benjamin, that’s an experience that happens over and over again.

The more hospital stays he has, and the longer they last, the more I get used to relying on the medical staff to keep track of his feeds, measure out his medications, monitor his temperature. I start to depend on his sats monitor to tell me if anything’s wrong, to let him lie around in his vest because I know it’s warm on the ward and his temperature is being checked hourly.

When we are discharged, late in the day, with an hour’s journey ahead of us and a whole family to feed and put to bed, I’m terrified I’ll forget something, miss something, or make a mistake. After each admission I have to get my head around new medications, changed doses, a new feeding regime, and a barely-recovered child.

This time, having been discharged once only to be readmitted for another fortnight, I had even more fears than usual. Normally I’m desperate to get out but this time I refused to take Benjamin home until he’d gone 48 hours without vomiting – which he very nearly managed a few times before vomiting at the 47th hour. When he finally did, acknowledging that I’d likely be just as nervous no matter when we took him home, I agreed to face it sooner rather than later.

The first feed back at home, he vomited straight back at us. The terror started to tug at my throat: it was happening again. He’d end up dehydrated, unresponsive, swollen, on a drip, maybe worse. After a month in hospital, stretching our family to breaking point, I couldn’t bear the thought that we might have to go back.

For two days we struggled as he vomited back more than half of his daytime feeds. I barely slept in case he was sick in the night. I spent an hour over each feed, trying to slip the milk down slowly without his stomach registering it, then an hour hovering over him … then an hour cleaning up. I approached each feed with trepidation, stomach churning, hospital bags ready by the door.

I feel like I always make the wrong decisions, especially when I have to balance the needs of the rest of the family, the disruption it causes the girls when Benjamin is in hospital. I rush my kids to the doctor only to be sent away with a flea in my ear and a note on file: ‘over-anxious mother,’ yet I carry on at home when we really should be on our way to A&E. I long for an objective observer to tell me what to do; but no-one knows Benjamin as well as me. Ultimately it has to be my call.

Thankfully, this time we had a halfway house – our wonderful children’s hospice, where we were due to go for a weekend break. I had been desperately looking forward to this as a chance to rest and be spoiled; now it became a place of safety too, somewhere with trained medical staff to share the responsibility and the decisions. I vacillated up until the moment we were due to leave. I phoned the hospital. I phoned the hospice. I packed, unpacked and repacked. I spent the journey phoning our dietician (I wasn’t driving). I fully expected to have one cup of tea and be sent packing to the Sick Kids.

But for once, it was the right call. For once, instead of getting worse, Benjy started to get better. In fact he pulled the usual stunt that he pulls at Rachel House, of sleeping all night and being no trouble to anybody so that I felt a complete fraud even being there!

The main factor in Benjamin’s turnaround was a step backwards, a step further away from ‘normal’ and closer to ‘medicalised’: we switched his feeds from three ‘meals’ a day to one long, continuous feed using a pump. It was at my request and I think it was another good, though dispiriting, call. I’ve been here before: I recognise that feeling of relief tinged with disappointment from when we finally gave in to tube-feeding instead of bottles. Now, it’s relief that Benjamin is getting the nutrients he needs and keeping them down, that he can stay at home with us and away from the monitors and needles; and disappointment that he no longer experiences breakfast, lunch and dinner like the rest of us, that he’s hooked up to a tube day and night, harder to cuddle, harder to play with.

But that’s a small price to pay, and it may yet be only a temporary one. Benjamin’s still not well; he’s tired, he’s flat, he’s pale and he’s sore; there’s a long road of appointments and interventions ahead of us to work out exactly what went so wrong over the past month and how we can rectify it, but for now we’ve found a way to manage it and to keep him at home where he belongs. The gnawing panic in my stomach is – slowly – ebbing away. The responsibility is firmly back with me, but I can handle it.

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Back in my own bed (‘Mummy, I’m okay, you can turn the light off now’)

The unexpected

“But Mummy it’s Monday. I always go swimming on a Monday,” she said, bursting into tears. I felt myself tearing up too. Disappointed with her that she couldn’t go. Frustrated that I couldn’t make it right. Guilty that it was my fault. Because I’d expected this. For two and a half years, while he surprised us all with his strength and resistance, while we revelled in our good fortune, I expected that one day this would come.

I expected we’d spend extended periods when Benjamin was in hospital. I expected the ambulance rides in the middle of the night. I expected he’d be cannulated, intubated, sedated, operated on, tested, tested and tested some more.

I expected his older sister to miss out on her regular and irregular activities, to be packed off to nursery for extra hours, picked up by people she didn’t know, to spend hours doing colouring in hospital waiting rooms.

I expected his younger sister to be dragged around wherever Benjy goes. To spend too much time sitting in buggies and car seats instead of playing. To be left dirty and hungry when he presents a more urgent emergency.

I expected my husband to spend his nights at the hospital and his days at work, so that we pass like ships in the night, handing over a bag of clean clothes in exchange for one of dirty laundry.

I expected our family to be fragmented, for Jackie to miss her father, for my husbandto miss his daughters, for me to spend nights cuddling up to the girls but feeling the emptiness where my boy should be, and days cursing the traffic on the A1 as I try to get from one of my children to the others.

I expected to be exhausted, unwashed, and alone. Because I’d asked for all this.

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I didn’t expect this horrible thing up my nose Mummy

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Keeping Daddy’s side of the bed warm

What I hadn’t expected, or asked for, was the kindness and generosity of our friends and family. I didn’t expect my godmother to arrive, bearing gifts, and spend a weekend getting our laundry up to date. I didn’t expect Granny to cancel her own medical appointments in order to travel up from Yorkshire – twice – and look after the girls.

I didn’t expect friends from Dunbar to show up in Edinburgh, claiming they’d “already been meeting someone else there,” and take Caitlin off in the buggy for two hours in the rain. I didn’t expect people who just happened to have children roughly the same age to take on playdates that extended past tea-time. I didn’t expect the neighbours to offer to babysit at all hours of the day or night.

I didn’t expect people to turn up on the doorstep with homemade cakes, soup, and great cauldrons of pasta Bolognese, complete with grated cheese to sprinkle on the top. Or at the hospital armed with fruit and chocolate.

I didn’t expect our hospice to send people all the way from Kinross to help out with the girls. Or the ladies from Family Support at the Sick Kids to take time out of their day to do the same. I didn’t expect the Charge Nurse to bend the rules so that I could breastfeed Caitlin on the ward.

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Sneaking a go with Benjy’s balloons

I didn’t expect friends, colleagues and acquaintances to message us daily to ask how Benjamin was, how we all were, and what we needed. I didn’t expect the outpouring of support and interest from people I’ve never even met except in Facebook groups. I didn’t expect SWAN UK to send Benjamin an enormous bunch of balloons, one of his favourite things in the whole world.

Edinburgh is the ‘Festival City.’ While Benjy has been in hospital we’ve been lucky enough to have the Meadows Festival and the Canal Festival just around the corner to make the days more fun for Jackie. But really, we’ve experienced a festival of friendship. All of these people, with enough to worry about in their own lives, dropped everything to help. I am humbled and overwhelmed by their kindness, and I realise what a difference even a small gesture can make when you have a sick child. Next time I hear of someone who has a child in hospital, I’ll try not to think “I’ve got enough on my plate,” but instead to ask “What can I do to help?”

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Chilling out together on the ward

To those who say my son is a drain on society

It’s about a year since I wrote a post for Scope about my disabled son, Benjamin, whom we decided to keep despite being offered a late termination of pregnancy. Amongst the many supportive comments on the post was one (swiftly removed by admin) that stuck in my mind: a comment berating me for my selfishness and the expense Benjamin would cause to the taxpayer. Benjamin’s recent stay in ICU – at an estimated cost of perhaps £10,000 (estimate based on this article) – brought this back to my mind. In fact I’ve heard variations on this opinion several times, perhaps increasingly in today’s political climate: that disabled people are ‘a drain on society’ and those of us ‘lucky enough’ to have the opportunity should prevent them coming into the world.

As new genetic tests become available, it is becoming more and more possible to do just that – for instance, as the NHS considers rolling out a non-invasive prenatal test for Down’s Syndrome (as well as Edwards syndrome, Patau syndrome and Turner syndrome), many are voicing concerns that it is being presented as an opportunity to ‘eradicate’ Down’s. As Hayley Goleniowska puts it in her blog, Downs Side Up, ‘I fear Down’s Syndrome is just the very visible tip of a much larger iceberg, with adults with non specific learning disabilities now being swabbed to look for genetic patterns to enable earlier diagnosis [and termination].’ Discriminatorily, for disabled babies there is no legal limit in the UK on abortion before birth although the limit for non-disabled babies is 24 weeks.

Quite apart from being frankly insulting to the millions of disabled people who contribute fully to society in every way on a daily basis, the premise that even the most severely disabled are a ‘drain on society’ is built upon a fallacy: that society is fundamentally about money. Taken to its logical conclusion, the moment any one of us is hit by a bus, contracts meningitis, enrols at state school, or wants our dustbin emptied, according to this argument we become a drain on society.

The word ‘society’ comes from the Latin socius (companion) and was first found in English in the mid-16th century meaning ‘companionship, friendly association with others.’ Society as thus defined is based on give and take. Yes, Benjamin receives disability living allowance from the state. Yes, in his first two and a half years he has received more healthcare input than we would have liked. Yes, his education may cost more than that of other children. But Benjamin gives hugely in other ways. No one can fail to be brightened by his smile, relaxed by his hug. The determination with which he tries simply to reach out and touch something that has caught his interest could teach many of us a thing or two about persistence. He has certainly taught me about priorities, principles and prejudice. He makes me acutely aware of the state our society is in, and more dedicated to making it better. It is no coincidence that disabled people, their families and carers are often the ones campaigning for social justice, battling against climate change, fighting discrimination in its many forms.

Benjamin will never get married or hold down a job. He will never start a business, own a house or vote in an election. He will also never get drunk and cause a multi-car pile-up, hold up a shopping mall with an AK47, or evade his tax bill. But his life has value, his voice should be heard and his needs should be met, because that is what society is all about.

I am very aware how lucky we are to live in a country where society, on principle and in practice, provides help with the extra needs associated with being disabled or caring for a disabled child. But believe me, families like ours are far from living a life of luxury at the expense of the state; nor do we enjoy being dependent on it. Benjamin’s specialist bed, bath chair, even his toys, are second-, third- or fourth-hand, and go back into stock to be used by another child when he outgrows them. For his feeds and medications, we make do with the same number of syringes in a month that a hospital would use in one day! Benjamin is too young to receive nappies from the continence service, but when the time comes we will receive perhaps half the number needed to keep him comfortable; the rest we will have to buy. I hesitate to speak for other families, but I suspect that most of those in our position are proud, even stubborn, and as a consequence extremely resourceful. Our dignity and that of our children is precious, so we tend to explore every avenue before finally turning to the state. Furthermore, a recent campaign has highlighted the extra costs of being disabled: costs over-and-above those borne by the state. Thanks to society, living with a disability has been made easier, but it is still harder than it should be. Choosing to let Benjamin live was never the easy option.

It is often said that the measure of a civilised society is how well it looks after its most vulnerable members. Benjamin shows us all that is good about our society, and all that can and should be improved. I cannot fault the care he has received from the education, health and social services, nor that from charities such as the Newlife Foundation, Capability Scotland and our local children’s hospice. We would not be where we are without the support of friends, family and neighbours. But there is a long way to go until our whole society values people like Benjamin for their true worth and doesn’t disparage them as a drain on resources.

Giving Benjamin a chance was the right decision for him, for his family and for society. Anyone who thinks otherwise should come and meet him; they might just change their mind.

Complexity

‘Has he recently come into contact with a scorpion?’ the consultant asked. Now, I know Dunbar seems like the back of beyond to inhabitants of the capital but really?

Apparently the only thing anyone remembers from medical school (I really hope it’s not the only thing) is the acronym I GET SMASHED, for the eleven causes of acute pancreatitis. (Just in case any readers have an upcoming medical exam they are : Idiopathic, Gallstones, Ethanol, Trauma, Steroids, Mumps, Autoimmune, Scorpion stings, Hyperlipidaemia, ERCP, and Drugs). And of course Benjamin being Benjamin, he comes under the first, idiopathic, i.e. we have no idea why this happened.

I woke at five in the morning to find him literally drowning in milk. His overnight feed, which is pumped slowly into his stomach had, instead of moving down into the intestine, passed up his oesophagus and then down into his lungs. Ambulance duly called, he was blue-lighted to A&E with Daddy while I stayed behind to clear up the mess and look after the girls.

After forty-eight hours of repeatedly vomiting large amounts of dark green bile, x-rays, ultrasound scans, blood tests, urine tests, stool samples, a lumbar puncture and a midnight laparoscopy under general anaesthetic, he was tentatively diagnosed with pancreatitis. Atypical pancreatitis (of course) because his blood showed none of the usual markers for it.

By this stage Benjamin was in intensive care, on a ventilator, and heavily sedated. For a few hours I wondered, How on earth did we get to this? But ICU quickly became our new normal, not somewhere to be feared but a place of safety, where Benjamin was receiving the best possible care and round-the-clock attention. We got into a routine too, Daddy staying overnight at the hospital and commuting to work during the day, me doing the day shift at the hospital and palming Caitlin off on anyone who would have her in-between feeds. Jackie and Granny held the fort at home.

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It’s not so bad, this ICU business

Meanwhile, behind the scenes, the doctors tried to fathom what was going on. Benjamin has such a complex of symptoms, even when he’s well, that it’s often hard to work out where one problem starts and another begins. Did he vomit some milk and then aspirate it which led to a chest infection? Or did he have a chest infection from which he swallowed some phlegm that made him vomit? Is his high muscle tone causing his chest to tighten and his breathing to become laboured? Or is he having trouble breathing which is stressing him out and making his muscle tone high? We’re walking a tightrope, balancing the management of all his symptoms with a cocktail of medications. One bug in the system – even something as simple as him gaining a little weight – and the whole delicate balance can come crashing down.

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Enjoying Mummy-cuddles back on the ward

The most likely (albeit still unlikely) cause for Benjamin’s pancreatitis was a reaction to his epilepsy drugs. But he’s already on one of the best drugs with the fewest side effects; there’s little else we can switch to. We can’t stop his epilepsy medications and risk daily terrifying, dangerous and debilitating seizures. Our only choice is to continue the drugs and watch, and wait. And the only treatment for acute pancreatitis is also to keep him comfortable, watch and wait…

And ten days later he was home, in a car full of balloons. We have been so fortunate with Benjamin. Compared with the dire predictions made before his birth, he has been so healthy and so strong: this is only our third emergency in as many years. With each emergency, with each long wait for the ambulance, each tense hour spent in resus, each extra day in ICU, each year that he lives on borrowed time, I become more scared that this time he won’t make it. But with each, Benjamin shows us just what a fighter he is. The moment he begins to turn the corner, he turns it fast. His condition might be too complex for the doctors to understand, but so far our little boy has beaten everything it can throw at him.

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I’m pretending that Mini Mouse balloon is nothing to do with me