Ahead of tomorrow’s World Down’s Syndrome Day GRAEME COUSINS chats to Mencap ambassador Cormac Neeson
Cormac Neeson’s son Dabhog has inspired the singer to write the most personal song of his musical career.
Dabhog did not have an easy start to life. He spent his early days in an incubator having been born three months premature, weighing just one pound and twelve ounces.
When their son was two-weeks-old Cormac and his wife Louise were informed he was being tested for Down’s Syndrome.
Cormac – a singer-songwriter best known as the frontman of The Answer who toured the world with AC/DC in 2008 and 2009 – said: “A doctor sat us down and said that he’d sent Dabhog’s bloods away to test for Down’s Syndrome. As soon as we were told that, even though we didn’t want to really fully admit it to ourselves, we knew. It just hadn’t been on our radar. It was a massive, massive shock. It was something else on top of what was already a deeply traumatic time.
“It just felt like every day was bringing more bad news. Our life was ruled by machines. We didn’t know entirely how they worked but we knew that when they went red that was bad and you needed to start shouting for help.
“When the results came back they told us what we already knew – that Dabhog had Down’s Syndrome.”
The impact of that experience had such a profound impact on Cormac that he sought solace in penning an emotional account of how he felt as his son fought for his life and what it’s like to bring up a child with a disability. The song entitled Broken Wing appears on Cormac’s new album with a percentage of the proceeds going towards Mencap, an organisation of which he has become an ambassador.
He said: “Down’s Syndrome was pretty alien to me. I didn’t know what caused it or what was involved in raising a child with Down’s or how our child would be different.
“Like any kind of seismic shift in your life, you try to deal with it in the moment and then you let it settle and get your head straight and work out what the next right thing is you’re going to do.
“You’re immediately handed leaflets about it, the first thing you do is try to learn what it is, what causes it.
“I remember being told that genetically it’s the presence of an extra chromosome 21 – that’s the genetic ID of Down’s Syndrome. Even knowing that and having that little bit of knowledge helped me to begin to deal with it all. It’s the unknown more than anything else that really scares you as a parent.
“It’s like any parent with a young child that’s sick and they can’t tell you what’s wrong with them. Even though 99 times out of 100 it’s just a cold or something that will pass, you’re genuinely scared because you don’t know exactly what’s wrong.”
He said: “We got speaking to different parents who gave us real life examples of how these children with Down’s Syndrome had grown into the most amazing people, really enhanced the lives of the people around them. There was a lot of positive emotion. It started us thinking maybe we shouldn’t be down in the dumps about this.”
Cormac explained how they didn’t have time to dwell on their son’s Down’s Syndrome diagnosis: “We had a very, very sick child in hospital while this was going on. From birth he was in hospital for four months. It took all your strength and focus and support from each other, from our families and friends to get through the days with our very sick child in an incubator. The facts he had Down’s took a bit of a back seat.”
Asked if children with Down’s Syndrome have more love to give or if that is a cliché, he said: “I can only speak about my own experience. Dabhog and his friends are a joy to be around and there is a unique affection and sense of love in the room.
“But at the same time it doesn’t always sit with me as that’s all they are. Where Dabhog is concerned there’s a whole spectrum of emotions there, a wide ranging and colourful personality. He’s much more than a child who gives you a big hug in the morning. There’s a massively mischievous streak which in fairness he gets from his mother.”
In terms of the language they use to talk about Dabhog’s disability, Cormac said: “We would always use person first language. Dabhog is a child who has Down’s Syndrome rather than a Down’s Syndrome child.
“I’m sure for a lot of people that’s an almost ridiculous differentiation but it’s so important to us that the disability doesn’t define the child.”
Asked if he was now blind to his son’s disability, he said: “Going back to when he was diagnosed we spent probably every day of the following week trying to find as many characteristics associated with Down’s Syndrome as possible. We were kind of obsessed about it.
“Now it’s 100% the opposite. He’s just a little boy. I look at him and think he’s one of the most beautiful things I’ve ever seen. He’s a bit of a looker – he gets that from his dad.”
Last year there was a new addition to the family in the shape of Conall – a baby brother to Dabhog.
Cormac said: “They’ve a beautiful relationship. For the first three years of Dabhog’s life it was just him, but now it’s a whole new dynamic. It’s pretty mind blowing. It does your heart a lot of good to see them together.”
Asked if they thought about the possibility of Down’s Syndrome with a second child, Cormac said: “Louise and myself definitely voiced the possibility. If we’d had a second child with Down’s Syndrome it would still have been the best blessing that we could ever have wished for and I mean that 100%.”
Cormac added: “I’ve been on a massive learning curve and will continue to be until the day I die, but just society as a whole seems to be on better terms with its understanding of Down’s Syndrome. It’s not just a sympathy vote.”
Cormac Neeson will release his new album White Feather at The Black Box in Belfast on Friday May 24.
The album’s lead single is Broken Wing, a song written about his son Dabhog: “As the song says, I wouldn’t change a thing about my baby’s broken wing. I mean that. I’m not just trying to ryhme with wing.
The song was co-written in Nashville with Blue Miller, who has since passed away.
Cormac said: “I remember coming up Blue’s driveway and I had in my head this great song idea that I was confident I was going to knock him out with. And then I saw on his roof there were these four massive buzzards. He told me there was a whole family living out the back. His wife Beth feeds them. He said one of them has got a broken wing and she gives him a bit of extra TLC.
“When he told me this story what I had in my head for the song disappeared. Something clicked and I told him about the situation with my son. That’s where Broken Wing came from. I write a lot of personal music, but never anything as personal as this. When I first heard it I didn’t know if I wanted anyone to hear it, including my wife.
“Maybe there’s potential for other parents sitting in neo-natal getting the news that we got, maybe they might hear the song and take some comfort from it. If that’s the case then it’s worth putting it out there.”
Tickets for the gig are available via Ticketmaster outlets.
White Feather is available to pre-order from www.cormac-neeson-uk.myshopify.com with a percentage of sales going to Mencap.
Cormac’s son Dabhog attended the Mencap Children’s Centre in Belfast when he was two years old.
The Centre is a unique specialist learning environment for children with a learning disability, autism and developmental delay, which is run in partnership with the Belfast Health Trust.
Earlier this year, Cormac became an ambassador for Mencap.
He said: “It meant an awful lot to me and to my family.
“My son spent a year of his life in this very children’s centre. He moved from being a baby to a little boy over the space of that year. He started reaching targets we could never have imagined happening when he was born.”
Margaret Kelly, director of Mencap NI, said: “I want to thank Cormac for all his support and encourage everyone to buy his new song ‘Broken Wing’, which thanks to Cormac’s support, will help raise valuable funds for Mencap’s early intervention work.
“This is a beautiful song with some very special lyrics that all parents will relate to, especially parents of children with special needs.”