Two parents, each with a Down's child... and a startling admission

A love story unlike any other: Two single parents, each with a Down’s child… and an admission that will startle many

Zoe McCullough is mum to three much-loved children, two of them with Down’s Syndrome, and when she says she hopes she and her husband, Allan, outlive their disabled son and daughter, it is a shock.

‘If I’m brutally honest, I hope they die before us because I know what would be left behind,’ she says. ‘For a start, it’s not their brother Archie’s responsibility to look after them. I wouldn’t put that on him.

‘And I wouldn’t trust anyone else to step into my shoes and take over their care because they wouldn’t do it properly.’

Zoe knows son Jay, ten, will never live independently. And although Lucie, nine — more able and adventurous — will achieve a degree of autonomy, she will always need her parents’ care.

So although Zoe and Allan are committed to looking after them into their old age — it’s a task she embraces, along with the hope that by campaigning for better resources for the disabled, she will improve their lives — she is also prepared to face the unthinkable.

People with Down’s typically live until they are 50 or 60; heart and lung diseases are the most common causes of death.

Zoe McCullough is mum to three much-loved children, two of them with Down's Syndrome, and when she says she hopes she and her husband, Allan, outlive their disabled son and daughter, it is a shock. From left: Allan, Zoe's daughter Lucie, Allan's son Jay, and Archie with mum Zoe McCullough

Zoe McCullough is mum to three much-loved children, two of them with Down’s Syndrome, and when she says she hopes she and her husband, Allan, outlive their disabled son and daughter, it is a shock. From left: Allan, Zoe’s daughter Lucie, Allan’s son Jay, and Archie with mum Zoe McCullough

Zoe, 33, who trained as a teacher but is now a full-time mum, is outspoken, wisecracking and unsentimental. Her love for her children is allied to an uncompromising belief that Jay and Lucie should not be cossetted because of their disability.

‘Allan and I are both disciplinarians. Poor children! You categorically have to be stricter with disabled children; not just for your own sake but because they need skills when they go out into the world,’ she says.

‘They should not be made to fit in. However, they should know how to use a knife and fork and have good manners. There’s no excuse not to.

‘And there’s no reason why they shouldn’t follow rules. They have chores to do at home. Jay unloads the washing machine and tumble dryer, but we try to avoid the dishwasher because he wouldn’t understand not to lift a knife out by its blade.

‘He loves to clean, which sounds ideal — but if I sit still for long enough, he’ll dust my face. And he has been known to wash the toaster in the bath.

‘Lucie is totally different. You have to bribe her with sweets to clean her room. She’s a bit of a diva. Sometimes she goes through the house like a tornado. She can make an awful lot of mess for someone so small, and if I give her instructions she just ignores me.

‘But unlike Jay — who attends a school for children with learning disabilities — Lucie goes to a mainstream school. She gets on with all the children there. To them, she’s different but she’s still just Lucie. The ultimate goal is to give them as much independence as possible, but that will be different for both of them.’

Although Zoe and Allan are committed to looking after them into their old age — it's a task she embraces, along with the hope that by campaigning for better resources for the disabled, she will improve their lives — she is also prepared to face the unthinkable

Although Zoe and Allan are committed to looking after them into their old age — it’s a task she embraces, along with the hope that by campaigning for better resources for the disabled, she will improve their lives — she is also prepared to face the unthinkable

That the happy, blended McCullough family includes two Down’s children is in itself a rarity. Zoe was a single mum to one-year-old Lucie and Allan was also raising Jay, then three, as a lone parent when their paths crossed eight years ago.

They started chatting on a social media support group, having noticed they each had a child with the same learning disability, and soon realised they shared other experiences, too: both Jay and Lucie had been through heart surgery.

‘For our first date we actually went out for dinner without the kids,’ recalls Zoe. ‘I think a bit of bribery was involved. My mum had Lucie — I was still living at home at the time.

‘I thought Allan was a decent guy. Neither of us throws compliments around, but he was all right. For three years he’d been Superdad (not that I’d ever tell him), bringing up Jay on his own.

‘We discovered we have the same personality — quite measured and considered, although Allan is more sensible than me. And we can both be very sarcastic at times.

‘The stakes are a lot higher when you have disabled children. You can’t just up and leave if things aren’t going right. Both of us knew the kids were our priority and that life wasn’t going to be easy. But we had no misgivings. And obviously we like each other quite a lot,’ she adds, with masterly understatement.

It's a minor miracle that she and Allan found time to get married, but they did so — for no pressing reason, Zoe says — in March 2020, two days before lockdown, at nearby Bangor Castle. 'It wasn't extravagant, there was no pomp and ceremony; that's not us,' says Zoe. 'The boys wore cute suits and Lucie was a flower girl in a pretty white dress, which was daft really as she attracts dirt.'

It’s a minor miracle that she and Allan found time to get married, but they did so — for no pressing reason, Zoe says — in March 2020, two days before lockdown, at nearby Bangor Castle. ‘It wasn’t extravagant, there was no pomp and ceremony; that’s not us,’ says Zoe. ‘The boys wore cute suits and Lucie was a flower girl in a pretty white dress, which was daft really as she attracts dirt.’

Some months later, they moved in together — and although their workload was doubled, they also now shared the joys and tribulations of their special brand of parenthood.

To begin with, Jay and Lucie, both used to the undivided attention of a single parent, were wary of each other. But bit by bit, a close affiliation grew, and today they are immersed in their own impenetrable world.

‘They’re inseparable. Sometimes we have to prise them apart. They love each other and whatever they do, it’s together,’ says Zoe.

‘They’re funny, too; they play imaginative games and I’d love to know what they’re saying, but they converse in their own special language which is incoherent to my ears. They understand each other, though.’

Jay bounds into the room where Zoe is talking to me on Zoom, and gives her a crushing hug.

I ask what games he likes to play with Lucie: ‘Dolls and houses,’ he announces, adding: ‘I love Lucie. It’s her birthday on Saturday and she’s going to blow out the candles.’

Both the children have confidence and charm, which has paved the way to modelling contracts. They have featured in billboard campaigns, adverts, a charity calendar and, in Lucie’s case, on the catwalk. But it was Jay who blazed the trail.

‘He was asked to go for a screen test by a mum at school who owns a production company, and I had no qualms as long as he was happy,’ says Zoe. ‘And he was brilliant! A one-take wonder.

‘He’s very compliant and good at taking directions.’

She talks about an educational campaign advert in which Jay featured. ‘You sat on a box and pretended you were driving a car and what did you have on your eyes?’ Zoe asks him.

‘Eyeballs?’ ventures Jay.

‘No, goggles!’ prompts Zoe.

‘It was fun. We had lunch and snacks,’ adds Jay.

Lucie, a natural performer, hurtles into the room and lists the names of all the classmates she is friends with, then announces that she loves ‘hot-tub parties, friends and playing Frappuccino’ — a game she invented from their visits to coffee shops, explains Zoe.

Lucie recently took part in an online fashion show. ‘I was on the catwalk and I did the floss,’ she says, demonstrating the arm-swinging dance move.

Tonight, the whole family — minus Allan, product manager for a joinery company, who is playing football — have decamped to Zoe’s mum Jo’s house, a few minutes away from theirs in Co Down, Northern Ireland.

Jo and husband Johnny, both in their 50s, often pitch in and help —tonight they are minding the children so Zoe can talk to me — and Jo’s mum Betty, 76, who is great-granny to all the children and lives just around the corner, lends a hand, too.

Allan’s mum, Joan, who lives farther afield, plays her part by doing all the family’s ironing.

It is easy, in the hubbub of their gloriously chaotic family life, to overlook the huge challenges they surmount daily. Jay, who has a pacemaker, has a multitude of heart defects for which he has already had six operations.

‘His circulation is poor, he can get quite lethargic and he doesn’t have the cognitive ability to tell us he’s in pain,’ says Zoe.

Lucie had an operation to repair a hole in her heart at five months, but her energy, in contrast, seems boundless. At school she has her own classroom assistant ‘who is basically her slave’, jokes Zoe.

‘But there will come a time when Lucie will plateau and she’ll need to go to a different school with more support.

‘Ideally, she’ll finish her primary education, then there will be a natural progression to a school for pupils with moderate learning disabilities. But she’s too capable to go to Jay’s school.’

The message Zoe is keen to impart is that children with Down’s have different abilities. While Lucie walked at 18 months, Jay was four years old before he took his first steps — but even the smallest and most belated triumph is applauded.

‘If Jay puts his shoes on the right feet, it’s a win. We never thought he’d go to the toilet on his own, but he did, six months ago, aged ten. We celebrate all these successes.’

When Archie, now seven, came along, Zoe and Allan — being accustomed to children with special needs — were astounded by his ability.

‘We thought he was a genius. We were ready to sign him up to Mensa! The difference between him and our other two is startling.

‘But, of course, we eventually realised that Archie’s just a typical child, although he’s a real dream because he has such empathy with his brother and sister, and an innate ability to be helpful.

‘Some mornings he’ll make everyone’s breakfast. I’ll come downstairs and he’ll have the toast on for all three of them. He’s the most caring, patient child and his brother and sister have made him like that.

‘You hear people say, “I want my child to be a sibling, not a carer”, but he takes naturally to the caring role. I don’t ever want him to resent it, though, so we make sure he has time to himself and with Allan.’

If Zoe’s insight into the needs of disabled children seems finely tuned, it is, because she also grew up in a household with two siblings with special needs.

She has three sisters, two of whom — Paige, 28, and Leigh, 23 — cannot speak and have epilepsy. Paige has autism and both have dyspraxia, the developmental co-ordination disorder.

‘Thankfully, partly as a result of my upbringing, I feel I’m equipped to manage challenges,’ she says.

‘I’m stubborn, like a dog with a bone. When we couldn’t get transport for Jay to get to school, I fought to secure it. There are a multitude of things you have to fight for when you have children with different needs.’

As an active member of the Ulster Unionist Party, she campaigns for disabled rights. ‘And if I can make life easier for another family who don’t have the same fight in them as me, then my job is done.’

She is fiercely pragmatic and although the family is a joyful one — the children’s smiles testify to happy, fulfilled lives — she never sentimentalises or trivialises the task of raising disabled kids.

‘We have a lot of fun,’ she says. ‘The kids enjoy tramping through the forest in their walking boots, they go swimming; they love football, and Lucie is a dirt magnet.

‘I’d rather they had holes in the knees of their trousers from playing outside than they sat inside in a perfect, clean house.

‘But I don’t think there are any upsides to having a disabled child over any other child. You hear people say “our lives are enriched” but, of course, not every day is wonderful. Some are s*** — but I have a nice friendship group of mums who support each other.

‘It would be quicker to get the dog to put shoes on than Lucie. She just ignores instructions. Jay is gorgeous, just adorable, but if he doesn’t have structure and routine to his day, he becomes vacant.

‘Sometimes I think: “I’m exhausted.” But I don’t dwell on it. Any child sucks the life out of you just for the fun of it.’

I ask if there is any space for romance in the couple’s life and she laughs. ‘Our priority is the kids and everything else takes a back seat. Lucie is the child who plonks herself between us on the sofa and comes into our bed at night.

‘There’s no reason, other than to tell us she’s awake. I chase her back to bed but she says: “Can’t I come in beside you?”‘

It’s a minor miracle that she and Allan found time to get married, but they did so — for no pressing reason, Zoe says — in March 2020, two days before lockdown, at nearby Bangor Castle.

‘It wasn’t extravagant, there was no pomp and ceremony; that’s not us,’ says Zoe. ‘The boys wore cute suits and Lucie was a flower girl in a pretty white dress, which was daft really as she attracts dirt.’

Lucie pops her head round the door again and grins with a wide, disarming smile. Her Auntie Kassi, 17, Zoe’s youngest sister, says hello and I ask if she has been helping with the babysitting.

‘I’m not a baby!’ objects Lucie loudly. Then along come Jay and Archie to remind everyone that Rangers, their team, are playing today and they need to watch kick-off on the telly.

Football. It’s one thing that unites them all — and for 90 glorious minutes, Zoe, supermum to three adorable, exhausting, spirited children, can put her feet up.

  • nihospice.org/donate