There are moments in life when time seems to come to a stop, and when it resumes, nothing is the same. While career diplomat Joe Hayes was preparing to celebrate a promotion at work, he was called to see the paediatric neurologist who had carried out some tests on his recently-born fourth child, Eavan. He was, he told Brendan O'Connor, a little disgruntled at having his work do interrupted, but he duly presented himself at the old Children’s Hospital in Harcourt Street, Dublin, told the neurologist he was supposed to be celebrating his promotion and the family was going on holiday the next day and anyway Eavan looked perfectly fine:
"And he said, 'Will you please sit down and listen to what I have to tell you? Your life has changed on this day. It will never be the same again.’ And he told us that Eavan had a thing called West syndrome. I never heard of it before."
West syndrome is a form of epilepsy that begins in infancy. As well as seizures (known as infantile spasms), it also causes developmental delays. And Joe, who recently gave a talk to school leaders, told Brendan that parents’ experience when it comes to children with special needs shouldn’t be ignored:
"For parents – we always hear about the child, you know – but, I tell you, it’s catastrophic. It’s the – you can think, you can prepare for everything, you know? You lose the job. If you’re in the civil service, you’ll say something to the minister and you’ll be sent off in Foreign Affairs to some godawful place. You lose your money. You’ll fall out with the wife and you’ll be separated. You don’t think about having a child with a disability."
During his illustrious career in the Department of Foreign Affairs, Joe was the Irish ambassador to – among others – China, Denmark and the Czech Republic. But the experience of being told his daughter had additional needs was a singular experience in his life:
"This was awful bloody news. And he kept saying to me – I wanted someone to blame – and he kept saying to me, ‘It’s idiopathic. It’s idiopathic.’ I never heard of the damn word. It means no known cause. I wanted to be cross with someone. Couldn’t get cross with anyone, you know? Yeah. I’ll never forget it, that’s for sure."
The whole family went to wherever Joe was posted, but the family wrestled with the idea of taking Eavan with them, given her complex needs. London was his first foreign posting and, as it was during the Troubles, it was a busy and high-profile position. But the worry that Eavan would be at a disadvantage in Margaret Thatcher’s Britain proved to be unfounded:
"Even at the height of Thatcherism, we found supports for Eavan and I learned be careful the judgements you rush to. She was well look after in Thatcher’s England and that’s the mark of a civilised society, caring for your most vulnerable."
That was pretty surprising, given that Margaret Thatcher famously insisted there was "no such thing as society". But probably more surprising was how the family fared when Joe was posted to China. People insisted to him before he went that taking a child with an intellectual disability to China would be impossible.
"But I discovered Deng Xiaoping’s eldest son, Deng Pufang, had been thrown off a high building during the height of the old Cultural Revolution and he was disabled – physically disabled – so there was, even at the national level, an awareness. I didn’t know that."
Another aspect of parenting a child with special needs is the effect it has on the family as a whole. Brendan asked Joe how Eavan’s arrival and subsequent care impacted on the rest of the family:
"That’s a tough one. You know, how do you – she's the priority. You love all your kids, of course you do, but she – and she’s a forever child. She never – all the other landmarks, the others passed them You know, they go to school, they do the Inter Cert and the Leaving Cert."
And the most pressing part of caring for Eavan is the uncertainty of what the future holds for her. She’s 33 now, Joe is long retired and he and his wife Deirdre worry about what will happen to Eavan in the future:
"When you talk to people in similar circumstances and they’re, as they get older, the anxiety comes back again: what will happen when we’re not there?"
You can hear Brendan’s full conversation with Joe by clicking above.