Loving Dads on the cycle of life
Despite being a charity fundraiser for Down Syndrome Ireland, it is a gruelling 650km trek, pace averaging 28kph. Many of the ‘leisure cyclist’ participants tend to be the type of lycra-clad stick-people who zip past on slick racing machines as you pant your way towards cardiac arrest during occasional token gestures at fitness since intensive training began last October.
But tucked in among the keen amateurs in this year’s TdeM are a bunch of near-beginners, ten fathers of children with Down Syndrome (DS). One sunny evening, seven of them sat down for a chat prior to a training spin.
Noel (Coleman, daughter Emily, aged nine): “The main reason for doing TdeM is to raise money, raising awareness on a secondary level, but first and foremost to raise much-needed funds for services we want to give our kids.”
Jude (O’Keeffe, son Adam, aged five): “Having seen the effort the 120 cyclists put in last year, I said, ‘being able-bodied, why not give it a go’.”
Conor (Roche, daughter Emma, aged two): “Yes, it’s for fundraising, and, yes, it’s for raising awareness, but it’s for Emma, that’s why I’m doing it.”
Noel: “I was oblivious, delighted, cutting the cord, and then there seemed to be a little bit of commotion. My wife is a midwife and knew … Yeah, so huge shock, you feel total robbery. All you ever want is for your kids to be happy, healthy, you’d like your children to be doctors, solicitors and so on — that goes out the window straight away.”
Jason (Bane, daughter Orla, aged six): “My wife’s also a midwife, so she knew immediately. With that comes a whole rush of emotions and lost dreams.”
Jude: “I told my daughter Hannah, ‘Adam has special needs,’ and she said, ‘we all have special needs.’ Now Adam has a bit more than most other children, it means more work, but so be it, we have to get on with things, he’s good and healthy in lots of respects.”
Mick (O’Gorman, son David, aged eight): “A big shock, I went through all the emotions. I started thinking of him age 50, 60 for some strange reason.”
Ray (Connolly, daughter Katie, aged three): “We were trying for a long time and had given up all hope. We were going to adopt when Jackie got pregnant. We were told at 20 weeks there was a possibility of DS, so had time to think about it. They told me twice in the delivery room, waiting for me to scream or shout, but I just asked, ‘is she ok? Is Jackie ok?’ ‘Yeah, they’re both ok.’ ‘Well, we’ll get on with it’.”
Conor: “I grieved for the daughter I thought I was going to have. The first thing I said was ‘I can’t believe I’m not going to walk her up the aisle’.”
Ger (Buckley, son John, aged six): “For three or four hours, I was very upset, but then I thought about it, thought we are going to meet people because of him, do things we never would have done. TdeM is one of those things.”
Jason: “Orla was very sick, until she had surgery at six months, and looking back, DS became a secondary issue. It’s amazing, there’s the disappointment of her not being the way you wanted her to be. Then there’s the risk she’s going to be taken away from you and you pull out all the stops to keep her alive.”
Mick: “There’s always a hurdle for kids with DS, no matter what you do, be it toilet training, walking, talking, school, there are hurdles all the way, but they will get there.”
Ger: “And then there’s a fierce celebration.”
Jude: “When a child with DS reaches a milestone, you will remember it forever, whereas with a ‘normal’ child, the memory blurs.”
Jason: “Orla is one year at school and to hear her reading her little book, I never thought I would hear that.”
Jason: “When you have a child with special needs, you recalibrate your expectations. Mine have moved towards independent living, having some kind of a job. In DSI Cork, we’re trying to create that kind of future for all our kids.”
Ray: “I can’t see the DS in Katie anymore. It’s not the worst disability in the world either, there’s a lot worse kids out there, that’s a bit of a blessing, also there’s the hope that she’ll be able to talk to us.”
Ger: “After six months, I was over grieving for the child I thought I was going to have. I wouldn’t give John back and get the guy I thought I was going to get.”
Conor: “Emma’s very healthy, brilliant, I love her to bits, every day DS crosses my mind, but I don’t see it any more. I’d never give her back.”
Mick: “Now, I don’t even think of DS. David’s a great little lad, a massive, positive contribution in my life, my family’s life, made me a more tolerant person. In school, other parents say how great it is for their children to know a child with different abilities. It’s brilliant that he makes a massive positive contribution to society.”
Noel: “With DS, there is a whole spectrum of speech development. Emily is very articulate, so we are very lucky. If she couldn’t speak, it would have been so much harder. We adopted a few years later. Danni is four and the two of them are great together, you don’t think of Emily as having DS, she’s just Emily.”
Jude: “I’d never be one for looking too far ahead. OK, we can talk about houses and jobs and all that, but it’s like climbing mountains. You think you’re going to struggle to get to the top, you look back and see what you’ve achieved. It’s the same with the child. You look back over six months and see the positives, how far he or she has advanced, set your next target and hope to achieve it.”
Ger: “It is up to you, it can be profoundly good or profoundly bad. I wouldn’t even call them bad times now, to be honest, as I perceived at the time.”
Conor: “What gave me hope; one day, I saw a family with a DS kid and I was thinking, ‘I’ll be grand, I’ll be ok.’ I didn’t know them then but it was actually Jason’s family. I started to imagine Emma being that age, standing, talking, wouldn’t give her back.”
Ray: “We waited a long time for Katie, so she’s the best thing ever to happen to me and to Jackie. I “ just adore the child, she’s made me a better person. I’d never give her back, not even for the ‘normal’ child.”
Throughout, there are endless testaments to the wives and the incredible work they do, a belief the husbands are only bringing up the rearguard in comparison.
But standing in the carpark later, watching the Dads head out the gate, you can’t help thinking those same wives would be travelling a much tougher journey without these men alongside them.
Tour de Munster, 2011 (August 11-14) is a four-day, 650Km charity cycle in aid of Down Syndrome Ireland. Participants collect individual sponsorship and volunteers accompany the tour, collecting in villages, towns and cities along the way. Participants cover their own costs, all funds go directly to DSI. Also contribute to: AIB 93-10-12 A/C 14938049.
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