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.



I’m sitting in a trendy coffee-shop, drinking a chai latte and tapping away on my laptop. There are no children to disturb my thoughts. I could be another (mature, obviously) student, a freelancer, a traveller catching up on email. Three ladies are knitting at the table next to mine.

They don’t know that I’m waiting.

This is the third time I’ve seen you down to theatre. It never gets easier. You were sleeping as we trundled your cot through the double doors, as I signed the papers and confirmed your date of birth. You awoke as they gave the injection, looked into my eyes. You knew I was complicit: I handed you over and they took you away.

You know that I’ll be waiting.

And then I too was away, hustled out the room by a nurse. Back to your cubicle, huge and empty, then out into the street.

What to do with the waiting?

Three hours, maybe four. No children. I could go for a haircut, or a swim, read a magazine, write a blog post. It’s novel and bewildering. I should make the most of it.

All I can think of is waiting.

I wander the streets for a while. Browse the magazines in the supermarket, but the articles seem irrelevant, facile. I end up here, with my chai latte and an enormous walnut cookie that I neither want nor need.


Checking my watch. Watching my phone. Waiting. Wasting. Waiting.

Helplessly waiting until you are back: safe, sleepy, sore, barely recognisable under the tubes and wires, but mine again. Worth waiting for.



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.


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