Zoe McCullough, mother to three precious children with Down’s Syndrome and two other Down’s Syndrome kids, is shocked when she said she hoped she and Allan would live long enough for their daughter and son.
“If they are brutally honest with me, then I want them to die before we because I would know the consequences,” she said. “For starters, Archie is not responsible for looking after them. That would be unfair on him.
“And, I wouldn’t trust anybody else to step in my shoes and assume their care. They wouldn’t do it correctly.”
Zoe is certain Jay (10 years old) will not be able to live on his own. 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 live to be 50-60 years old; the leading causes of death are heart disease and lung diseases.
Zoe McCullough, mother to two children with Down’s Syndrome and Zoe’s daughter Lucie, is shocked when she said she hopes Allan and she outlive their disabled sons and daughters. From left: Allan, Zoe’s daughter Lucie, Allan’s son Jay, and Archie with mum Zoe McCullough
Zoe (33), a former teacher who is now a mother full time, is open-minded, wisecracking, and unsentimental. Jay and Lucie shouldn’t be cosetted, despite her love for them.
“Allan and me are both disciplinarians. Poor children! She says that you must be more strict with children who are disabled. Not only because of their needs but because it is a matter of survival.
“They shouldn’t be forced to fit in. But they need to know how to use forks and knives, and be polite. It’s impossible not to.
They don’t need to be following rules. Both have household chores. Jay loads the washer and dryer. We try to keep Jay away from the dishwasher, as he would not understand how to get a knife by the blade.
‘He loves to clean, which sounds ideal — but if I sit still for long enough, he’ll dust my face. He has even been known to take the toaster to the bathroom.
Lucie’s personality is quite different. It is necessary to offer sweets in exchange for her cleaning her room. You can call her a “diva”. Sometimes, she can make the whole house a tornado. For someone as small, she can create a lot of chaos. If I try to give her directions, she will ignore me.
‘But unlike Jay — who attends a school for children with learning disabilities — Lucie goes to a mainstream school. She’s good friends with the other children. She’s not the same as Lucie, but it’s clear to them that she is different. Their ultimate goal is for them to have as much autonomy as possible. However, that won’t be the case for 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
The fact that two Down children are part of the McCullough families is a rare find. Eight years ago Zoe was single mom to Lucie (then one year old) and Allan was raising Jay (3-years-old).
After noticing they both had children with learning disabilities, they started to chat on social media. Soon, they realized they had many other shared experiences: Jay and Lucie had had heart surgery.
Zoe recalls, “For our first date, we actually went out to dinner without the children.” “I believe there was a little bit of bribery involved. My mum had Lucie — I was still living at home at the time.
“I considered Allan a decent man. He was decent, though neither of us like to give compliments. He was Superdad for three years, raising Jay by himself.
‘We discovered we have the same personality — quite measured and considered, although Allan is more sensible than me. Both of us can be very sarcastic.
“Disabled children have more at stake. It’s not possible to just get on with your life if it’s not going well. We both knew that the children were our number one priority, and that it wasn’t easy. We had no doubts. We like each other very much, she says, masterfully understating.
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. Zoe states that it was simple, not lavish, and had no pomp or ceremony. The boys wore nice suits while Lucie was dressed as a flower girl. She was wearing a beautiful white dress and the boy’s wore adorable suits.
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.
Jay and Lucie were initially wary because they both had to share the attention of one parent. Slowly, however, they became more close and are now immersed within their own world.
‘They’re inseparable. Sometimes they need to be separated. “They love one another and do whatever together,” says Zoe.
‘They can be funny; they have a lot of fun and they are very creative. I wish they could tell me what they were saying but their language is so incoherent that it’s hard to hear. But they understand one another.
Jay runs into Zoe’s room and gives Zoe an overwhelming hug.
I ask him what games he plays with Lucie. On Saturday, it’s her birthday and she will blow out the candles.
They are both charming and confident, which helped them land modeling contracts. Their images have appeared in ads, billboards, charity calendars and even on Lucie’s catwalk. Jay, however, was the first to set an example.
Zoe says that a mother at school had asked her son to take part in a screen-test. I was fine with it as long as he was satisfied. He was absolutely brilliant. One-take wonder.
“He is very patient and can follow directions well.”
Jay was featured in an advertisement for an education campaign. She speaks about it. “You were sitting on a cardboard box pretending you were driving, what do you have in your eyes?” Zoe asked him.
‘No, goggles!’ prompts Zoe.
It was great fun. Jay says that Jay and Jay had lunches and snacks.
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 participated in an internet fashion show recently. She demonstrates the arm-swinging move by stating, “I was on the catwalk, and I did it the floss.”
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.
Joan Allan, Allan’s mother, lives further away and does all of the ironing for her family.
Their chaotic and joyful family life makes it easy to ignore the immense challenges they face each day. Jay is a pacemaker and has been through six operations to correct various heart conditions.
Zoe states that Zoe believes his circulation problems are a major reason for Zoe’s discomfort.
Lucie was five months old when she had a heart operation. But her energy seems unstoppable. Zoe jokes that Lucie has her very own assistant in school, who is basically her slave.
“But Lucie will reach a point where she is no longer able to cope and must move to another school that offers more support.
“Ideally she will finish her primary education. Then there will be an natural progression to school for students with mild learning disabilities. Jay would be too proud of her.
Zoe wants to convey the message that Down’s children have unique 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.
Jay should put his shoes on the correct feet. He went to the bathroom on his own six months ago. We didn’t think he would do that, but we were wrong. All these achievements are celebrated.
When Archie, now seven, came along, Zoe and Allan — being accustomed to children with special needs — were astounded by his ability.
He was our genius. He was ready for Mensa. It is amazing to see the difference in him from our two other children.
“But of course we eventually realized that Archie was just a normal child. However, he is a true dream because he shows such empathy for his sister and brother, as well as an inborn ability to help others.
“Some mornings, he will make breakfast for everyone. He’ll make the toast for everyone downstairs when I come down. He is the sweetest, most patient of children. His sister and brother have taught him that.
Many people will say “I want my child a sibling, and not a caregiver”, but he is naturally drawn to that caring role. He doesn’t have to feel resentful, but we ensure he gets enough time for Allan and himself.
Zoe is a gifted observer of the needs and wants for disabled children. She also has two other siblings who have special needs.
She has three sisters, two of whom — Paige, 28, and Leigh, 23 — cannot speak and have epilepsy. Paige and Leigh have autism, as well as dyspraxia, a developmental co-ordination disorder.
She says that ‘fortunately, partly because of my upbringing I feel equipped to handle challenges’.
“I am stubborn like a dog with bones. Jay was unable to travel to school because of lack of transportation. I worked hard to make sure he got it. You have many options when your children have different needs.
She is an active member the Ulster Unionist Party and campaigns for disability rights. “And if I can make it easier for someone else’s family, that’s my job.
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.
She says, “We have lots of fun.” The kids love walking through the forest, swimming, football and Lucie are a magnet for dirt.
“I would rather that they have holes in their knees from outside play than to sit inside in a clean, perfect house.”
I do not believe that there is any advantage to raising a disabled child more than any other child. People often say that their lives are “enriched”, but not all days are wonderful. Some are s*** — but I have a nice friendship group of mums who support each other.
“It’d be faster to get Lucie to wear her shoes than to make it easier for him to do so. She ignores all instructions. Jay is delightful, adorable. However, Jay becomes unstructured and unorganized if his days aren’t structured.
“Sometimes I think, “I’m tired.” It doesn’t bother me. Every child will eat your life just to have fun.
When I ask the woman if they have any time for romance, she giggles. “Our primary concern is our children and all other things are secondary.” Lucie will lie between us on our sofas and then climb into our beds at night.
“There is no other reason than to inform us that she is awake,” I tell her. I follow her to the bed, but she insists that I join her.
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.
Zoe states that it wasn’t lavish, and there was no pomp or ceremony. The boys wore nice suits while Lucie, a flower child in pretty white dresses was dressed up as a girl who attracts dirt.
Lucie smiles broadly and defiantly when she looks back at me. My Auntie Kassi (17-year-old Zoe’s younger sister) says hi and I inquire if she is helping me with babysitting.
“I am not a baby!” objects Lucie loudly. Jay and Archie arrive to remind everyone that Rangers are their team and that they must watch kick-off live on TV.
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.