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, 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 …….