Lifting Alex is a way of life for John and his wife Sonya because effectively they are their little girl’s arms and legs.
Five-year-old Robyn, their middle child, is that vital set of eyes to watch out for her older sister when her parents can’t be with her while she’s at school.
Sonya, 38, knows the responsibility could weigh heavily, but what’s the alternative when their oldest daughter will never ever be able to fight her own corner?
The two girls sleep in the same room as an added precaution because if Alex is unwell, who can she tell — she is quadriplegic, with cerebral palsy.
The Butlers’ life was changed, irrevocably, on Apr 12, 2005, when their first child suffered significant injuries at birth. Two weeks ago, the HSE admitted liability and an apology was read out in court as part of the settlement of Alex Butler’s action for damages, with a €1.4m interim payment.
The Butlers, from Kilmacleague, Dunmore East, Co Waterford, say the settlement brings financial relief for the next two years, but that their lives have effectively been destroyed.
“The easiest thing in the world would be to take anti-depressants, but do you want to live like that?” she asks.
They say they will never get over the bitterness, because what happened to their daughter was entirely preventable.
They have had to fight, they say, every step of the way, to get what is necessary for Alex to lead any kind of life at all. That included a one-and-a-half year battle for an automated wheelchair, a year for a medical card and an eight-year wait to get an apology from the HSE.
John, 35, says he and Sonya get frustrated because they’ve been “given a sentence we have to take”, and that despite the financial aid, “nothing changes”.
Sonya says she would have coped better with losing her husband than having to cope with what happened to Alex.
“I will have to watch Alex struggling for the rest of her days to carry out the simplest of tasks, and emotionally, that destroys me,” Sonya says.
“I always say ‘when this is over’,” Sonya adds, “but it never is. Even when we were leaving the High Court in Dublin, I didn’t have that feeling.”