Blue door number one

Here in Scotland I sometimes feel a long way away from my friends and family in the south of England. It’s not easy to travel with three children and all Benjamin’s equipment. So I’m super-grateful when people from home put their own comforts to one side and make the journey north to see us here, in the first house on the street, with the blue door. Jackie calls it ‘blue door number one.’

But sometimes visitors unwittingly put Benjamin at risk, as in our recent experience with chickenpox. One encounter led to months of frustration: the simple fact that he’d come into contact with the disease necessitated missing out on nursery, important outpatient appointments and vital respite breaks in case he was infectious to other vulnerable children. When he finally succumbed, like many children with complex needs it became, well, complex. For a couple of days he spiked temperatures and, despite our efforts to manage them, at five o’clock one morning he entered a tonic-clonic seizure. We gave rescue medication and called an ambulance. Two hours later in resus, the seizure was finally halted. A month later, after a second mad dash to A&E, five viral infections contracted due to the damping effect chickenpox has on the immune system, an unpleasant bacterial gut infection, and a recurrence of his previous pancreatitis triggered by the trauma, he’s finally home. Three weeks of breathing support, intravenous feeds, and constant nursing care in HDU. Two operations to obtain intravenous access to his ravaged little body. A month of sending Jackie off to extra nursery sessions and running ourselves ragged juggling childcare, work, and hospital. Caitlin learned to sit up, in hospital; was weaned onto solids, in hospital; cut her first tooth, in hospital. An exhausting month for all of us, which I could have avoided.

‘Let’s stay here Mummy, it’s more fun than home!’

And now that he’s home, I’m terrified something similar will happen again. I know that however hard we try, Benjamin is always going to pick up infections: from nursery, from his sisters, from hospital. But should I try harder to minimise that risk? Should I limit the people we see, the places we go, and the people that come to see us? Should I close that blue door on the world?

I always wanted to have an open kind of a house. A house overflowing with children and dogs, artists and musicians, where the kettle was always singing, the biscuit tin always ready, and nobody minded if you walked in with muddy shoes. (I realise this is completely incompatible with my general controlling-verging-on-OCD type character, but I am getting to be an expert at cognitive dissonance). And funnily enough, thanks to Benjamin, we seem to be getting closer to that ideal. We’re becoming part of a community of people who help each other out, share in each other’s joys and sorrows, take on each other’s cooking and childcare, leave their garden gates open and their front doors unlocked. I don’t want to lose all that. But at the same time, and particularly after our experience this summer, it’s tempting to hide away, to discourage visitors and the risks they bring. To avoid the germ-ridden playdates and the noisy parties in favour of snuggles on the sofa and the same old kids’ TV shows. To give in to the fear and close that blue door number one.

Mediterranean style

This time last year we were enjoying sun, sea and ftira (a bit like pizza) on Gozo, a small island off Malta, in the middle of the Mediterranean Sea. I couldn’t even have told you how far away from a hospital we were, and it didn’t seem to matter. I can hardly imagine it now. This past fortnight we were due to take another holiday – just a road trip to the south of England to catch up with friends and family we haven’t seen recently (or at all, in the case of one new cousin!), to attend a conference and revisit our old university towns. We could reschedule, but it’s tempting just to write it off, for fear of ending up in an emergency room far from home. To stay close to our local hospital and hospice, to the people that know Benjamin and his needs, to the community team that can come out at a moment’s notice. To stay safe behind blue door number one.

I can see how it’s all too easy for SN families to become isolated. Even sitting in the sports club while Jackie’s in her dance class, I find myself hiding away from the other waiting mums, feeling conspicuous as I set up Benjamin’s tube-feed, shielding him as snotty toddlers run around coughing without covering their mouths. It’s easy to get caught up with caring; to find it just too much of an effort to get out; to feel that your old friends don’t understand and are bored by you; to lack the energy to make new friends; to avoid everything from toddler groups to family gatherings to mums’ nights out. To work from home; to shop on the internet; to hide away from the people who stare, the people who criticise, the people whose lives just seem too Pinterest-perfect, too full, too sorted. The fear feeds into all that. It makes me want to close that blue door and shoot the bolt home hard.

**

If we had gone south this week, we would have attended a Celebration of the Life of a very special little boy, a boy who brightened the day of everyone he met and many he didn’t (you can read his beautiful story here), who seized every day and loved every minute; and who we never really knew before it was too late. His passing shows us that life is too short to live in fear and guilt. Life’s too short to spend in blame and recrimination. Life’s too short not to take every chance, accept every offer and keep every door open.

This little boy that I never met shows me that I need to embrace the fear so that my children, including and especially Benjamin, have a full life, a full range of experiences and interactions. Much as Jackie would happily sit on the sofa and watch Ben and Holly all day, there’s no point having three healthy children with no experience of the world of ‘big people’. However much easier it makes life for me, I’m not doing them any favours overprotecting them now. They don’t deserve to miss out on meeting all the wonderful folk out there. The ones who come over only to help. The ones who can’t come to us but so appreciate a visit. The ones that simply do brighten up our day.

We can’t eliminate risk. The best we can do is to minimise it through preparation: through awareness, research, and planning. If necessary, through mapping the A&E departments along our route when we go away; through knowing who to call and where we can get supplies. Through vaccination, sensible hygiene, a decent diet and enough occasional sleep. Through learning when to struggle on and when we have to get to a hospital now. So yes, I will still be fearful, but I’d rather be fearful out there among friends, than fearful hiding away, behind blue door number one.

‘Come on, Mummy, the water’s lovely!’

One SWAN mother to another

We wear our brightest colours;

To celebrate one of our brightest stars.

We have lost a precious one of our number;

You have lost an essential part of yourself.

He leaves a perfect, cygnet-shaped hole in our community;

He leaves a gaping wound in your heart.

He was one of life’s characters; a charmer, a maestro, a card;

He was just a little boy, your little boy.

We loved him;

You will always love him.

We weren’t ready;

How could you ever be ready?

We share your grief;

But we cannot lessen it.

We fumble for words;

You are gracious and eloquent as ever.

We share the same fears;

You face them head on.

We marvel at your strength;

You just do what you have to do.

We rage at life’s unfairness;

You know that life isn’t fair.

We feel helpless;

We are honoured to help just a little.

We stand at your side;

Though we are miles apart.

With love.

Image by Rolf (http://blog.meetthegimp.org/episode-60-divide/) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

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.

 

 

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.

Pitching 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. It 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.

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.

On 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.

*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);
   

   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;
5. 

   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?

    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”

    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;
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…

…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 47^th 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.

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.

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

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.

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?”

Chilling out together on the ward