A smile that has won a thousand friends

JUST before 10am on the morning of October 26, 2004, life altered irrevocably for Eugene and Bridget Lorrigan.

“We were on a certain path that day but the railroads changed that morning and we went on a different path. And this wasn’t the path we signed up for,” Eugene reflected in his sitting room in Blain, Kildysart last week.
The couple’s second son, Jason had entered the world, a brother for Kieran, who is now aged nine. Within hours, Eugene and Bridget sensed Jason had serious health issues.
“When I first went to give him his bottle after coming from the delivery ward, he didn’t know how to suck. We’re all born with suck/swallow reflex but he didn’t know what to do with the bottle. He was chomping on it,” Eugene explains.
The following weeks and months harboured additional ominous signs for the Lorrigan family.
“He didn’t sit up, he didn’t smile on time, he didn’t crawl on time. Alarm bells started ringing, having already had a child to compare to,” Eugene recalls.
Now aged six, Jason has been diagnosed with terminal illness. Yet he has never been diagnosed with a specific condition.
“Jason has no diagnosed condition,” his father confirmed. “He presents with the symptoms of 16 different syndromes with no one syndrome diagnosed. His blood doesn’t confirm anything. He has a myriad of medical problems all feeding into one but there’s no name for it. He may have eight out of the 10 signs of autism but he doesn’t have autism. He ticks all the boxes for Angelman Syndrome but his blood doesn’t confirm it. He presents with some of the symptoms of Rett Syndrome but again, he doesn’t confirm it. Unfortunately, that’s where Jason sits,” Eugene adds.
Jason is wheelchair-bound and non-verbal. His parents have given him every vestige of love and attention humanly possible in his six years. As much as their lives were turned upside down almost seven years ago, even more tragic upheaval is imminent. Jason is not expected to live long enough to mark his seventh birthday on Wednesday, October 26.
“It’s something I think about a lot,” Eugene admits. “I’ve got a lot of advice, ‘to live for the day now’. But my mentality is always to live in the future and when he will go, what will happen afterwards?”
“I really believe it’ll test everything. Every bone and muscle and everything in our body. No more than any parent who has buried a child. I dread it. But please God, he’ll send us the strength from the other side and he’ll get us through it,” he whispers.
Jason doesn’t sleep much at night. Since he came home to Blain nearly seven years ago, either Eugene or Bridget have had to stay up at night to care for him.
“We’ve mighty, mighty friends but at night time, it can be a very lonely night because Jason doesn’t sleep. It can be a very isolated night where you’re sitting up and you think you’re on your own in this world. To see the morning coming, you know the darkness of the night is behind you. It’s a very, very lonesome time,” Eugene says.
“Now it’s the waiting game. We’re trying to live in the day. Many a broken heart has hidden behind a smiling face, as Fr Colm said the other day. It’s a very true saying,” he maintains.
Fr Colm Hogan is the recently appointed Kildysart parish priest and is sitting in the room as Eugene speaks. They didn’t know each other six months ago but now are inseparable friends. Two weeks ago, they hiked in the Austrian Alps in a fundraiser for the Share A Dream foundation, which has been of immeasurable help to the Lorrigans. Fr Colm and Eugene are also due to walk the upcoming Dublin City Marathon to raise more funds for the same charity. Kildysart and surrounding communities will get a chance to help Share A Dream in the local community centre from 12 noon next Sunday, when all proceeds from a family day will be donated to Share A Dream.
Fr Colm can’t give his new friends a rational explanation as to why this has happened to them and to Jason.
“The God I believe in, I would never think it is God’s will. It’s very hard to explain,” Fr Colm acknowledged.
Amazingly, Jason attends Kildysart National School when he can. Fr Colm has witnessed first hand how the children mind and treat their friend.
“Every child in that primary school loves Jason Lorrigan. They all look after him. He’s an amazing little fella. I’ve heard a few of them saying, ‘I’m looking after Jason today’,” Fr Colm discloses.
“It challenges the children too to have a different type of communication because Jason is non-verbal. They have to make an effort themselves to connect with him. But Jason makes it very easy, without even knowing himself because he gets everyone to shake hands with him,” he smiles.
Such is Jason’s insistence on shaking hands with anybody he meets, Fr Colm can’t but suggest that he would fit in, in Ecuador, where he ministered for several years.
“I’ve often said to Eugene that Jason would be at home in Ecuador because no matter how many times you meet someone there, you have to shake hands with them, whereas in Ireland we wouldn’t be like that. But if you meet Jason 10 times in different situations, you have to shake his hand,” Fr Colm laughs.
Prior to Jason’s birth, Eugene was fairly religious. That changed, although in recent times, he has regained some of his lost faith.
“I would have had a great faith up until Jason was born. But after that, I turned totally against the Church. I couldn’t understand what we had done to deserve this,” Eugene says.
They hoped and begged for a miracle for their son. That didn’t happen but Eugene feels Fr Colm’s presence in their lives has been invaluable.
“We didn’t get the answer to the miracle but we got an angel to walk the road with us in the form of Fr Colm. We didn’t know him six months ago and he has become a best friend of the family and I don’t think we’d be where we are without him. I’d say that from the top of O’Connell monument. I couldn’t speak highly enough of him. So to ask me am I religious? Yes, now,” Eugene replies.
“As one woman said to me a long time ago, ‘you can’t be angry with God and not believe in him at the same time. It’s either one or the other’. I obviously must believe if I’m angry,” the Ennis man acknowledges.
Eugene clings to the belief that Jason will be in a better place in time.
“If I didn’t believe that Jason was going to on to something better than this life, I don’t think I’d cope. I think that came through this man. [Fr Colm] I was so angry and that anger is still there to an extent but I now pray,” he said.
Having lived through the tribulations of the last seven years, Eugene says he and his wife are in a new place.
“We’re not the same people as we were but maybe we’re stronger? I like to think we’re doing our best by him. Only other people can be the judge of that. I hope we’re doing the best by him,” he says.
“If you didn’t have the support of family, friends and the likes of Share A Dream, personally speaking, I think it would be very easy to go off the rails. Share A Dream have given us memories that no one will ever take from us,” Eugene maintains.
He is hopeful that Share A Dream’s work with his family will be met with plenty of support for the family day in Kildysart Community Centre on Sunday. By extension of course, that support will reflect the community’s fondness for Jason.
“I always say Helen of Troy had a face that launched a thousand ships and that Jason has a smile that has won a thousand friends. I’ll always say that until the day God will take him from us,” Jason’s father concludes.