Remembering my husband Jonathan Irwin: ‘God help you if you were targeted because you couldn’t say no to him’

Businesswoman and former senator Mary-Ann O’Brien is no stranger to grief. “I have a master’s degree in the subject,” she says wryly.

She lost one of her twins, John, just before birth; another son, Jack, at 22 months; and then teenage stepson Sam in an accidental fall – all within six years of each other in the 1990s. Later, there were the deaths of her parents in quick succession. Now she is mourning the death of the three boys’ father – her husband and best friend Jonathan Irwin, who died three months ago.

“I am in the bunker – just getting out of it,” she says at the kitchen table of her house on the Mount Juliet estate in Thomastown, Co Kilkenny. She and Jonathan moved here a decade ago and mementos from their nearly 40 years together, in the form of art, photographs and framed newspaper and magazine articles, jostle for wall space. Plants have colonised the window sills and even hang from the ceiling in the kitchen, where an air of lived-in comfort emanates from the large, cream Aga and scattered beds for the four resident dogs – two bulldogs, an Italian greyhound and a collie-whippet cross.

The final silencing of Jonathan’s forthright and jovial Anglo-Irish voice that rang around these rooms was a real shock for Mary-Ann. She fondly mimics him many times during this interview, which she says he would have loved to do. But now it falls to her to take the opportunity to mark a major milestone of their joint passion – the Jack and Jill Children’s Foundation.

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This month, the charity they founded 26½ years ago, to provide at-home nursing care and respite support for children with severe to profound cognitive delay, has taken the 3,000th family under its wing. They are all households where life was irrevocably altered by a stroke of fate, and parents found themselves struggling to care day and night for a child with very complex needs, just like Jonathan and Mary-Ann.

Their son Jack was born apparently perfectly healthy in the National Maternity Hospital on February 29th, 1996, but he was “a very mucusy baby”. With mother and baby due to go home the next day, he spent his first night in the hospital nursery, where he suffered what she guesses was a cot death. “By the time they resuscitated... [he] couldn’t swallow, couldn’t see and was completely paralysed.”

They took him home, despite being frankly warned by a paediatrician that the strain of looking after him would be immense on them as parents, on their marriage and on their other two young children. The only way to get State support for Jack’s care, they were told, would be to leave him in a children’s hospital, but there was no way they were going to abandon their son.

Instead, he lived with them at home for 22 months, in frequent pain and crying around the clock. “He had a difficult life, but that is where we can get very lofty about Jack because he was obviously here for a reason,” she says.

“He certainly taught us a huge amount about human beings because we were taken to a different place. Other people would have done better than us,” she says in typical, self-deprecating fashion. “We simply couldn’t cope.”

Tube-feeding would take up to 18 hours a day, with constant interruptions through reflux, vomiting and epileptic fits. As the mother, she says she was very wrapped up in caring for Jack. “Whereas Jonathan was getting increasingly crosser and angrier that there was no one to help us.”

While the lack of official support was driving him “insane”, some “amazing neighbours” in Ballitore, Co Kildare began knocking on the door, offering practical help. Among the volunteers who emerged were two nurses, Nora Byrne and Imelda Whelan, who changed their lives.

The pride of the house was Jack and Jill, that’s where my heart lay. At the end of the day, it’s great having a business and making money, but it’s nothing like making money and making people’s lives more bearable

“The baby started to thrive and prosper under their care. For example, Nora said water was a great place. We used to feed him in the bath because he didn’t have epileptic fits so much in the bath.” Jack’s godfather, Richard Butler, gave the couple a sum of money that he said they were to use to pay for nursing support and soon they had four women “doing pieces of hours and nights”.

As Mary-Ann was able to get a night’s sleep again and return to do some work at her thriving chocolate business, Lily O’Brien’s, life began to get a little brighter. Their other two children, Lily and Phonsie, began to see their parents smiling again. Before that, “there were days I would not get them to school”, she admits.

“Jack and Jill was sort of hatched at the kitchen table. Literally through our own experience, we began to see sunlight coming into the house: little bits of happiness – including the baby. His quality of life for the last year was so much better.”

They wanted to replicate this lifeline for other families in the same situation. “We knew nothing except horse racing and chocolate,” she says. “But we knew a lot of people.”

The pair of them had moved for so long in the “golden world of horse racing”– she from childhood as the daughter of trainer Phonsie O’Brien, who was the brother of Vincent, and Jonathan as a bloodstock agent and chief executive of Goffs horse sales.

They harnessed the generosity of many wealthy connections to fund the start of the charity, which Jonathan decided at the age of 55 would be his new full-time job. He threw his characteristic ebullience and innovative vision into raising funds, awareness and political lobbying as the public face of Jack and Jill for the next 20 years.

“God help you if you were targeted by Jonathan because you couldn’t say no to him,” says Mary-Ann, 20 years his junior.

It was certainly not love at first sight for either of them. At their first encounter, during what was a job interview for her at Goffs in Co Kildare, both of them felt they could not get out of the room fast enough.

As Jonathan recalled in his memoir, Jack & Jill published in 2014, “as far as she was concerned here was this man who looked like a boiled egg in a stuffed shirt”, while he thought she was “a hideous, appalling communist”.

But their paths crossed again when both were working at the Phoenix Park Racecourse in Dublin and after his first marriage, to Mikaela Rawlinson, had broken down. “We found that we got on fantastically well,” he wrote. Although, “I always say Mary-Ann and I have nothing in common.”

Not much in common, she agrees. “I was an outdoor person; I just loved gardening, growing vegetables and the dogs and exercise. Jonathan liked sitting down by the fire, reading and cosy. But we had a lot in common from an entrepreneurial point of view and we would spend hours at the kitchen table, thinking up mad things for the charity to raise money.

“The pride of the house was Jack and Jill, that’s where my heart lay. At the end of the day, it’s great having a business and making money, but it’s nothing like making money and making people’s lives more bearable.”

She sold part of Lily O’Brien’s in 2013 and sold the rest in 2018, in a reported €40 million acquisition deal. Meanwhile, she had been nominated to the Seanad in 2011 by the then taoiseach Enda Kenny, “which was a great place to be for Jack and Jill”. It gave her access to the “inner circle” in Leinster House. “Jonathan was delighted.”

We were very stimulated by each other’s conversations, great readers. And I really missed that in the past couple of years. He was my pal

Sitting on the agricultural committee, she found it both very interesting and frustrating. “It takes a long time to get things done, it’s not like the business world. In another life, I wish I had been younger and I would have carved a career, but I had a taste of it and got a lot of things done. But, my God, you have to be a patient person.

“I felt very fortunate being in there and not ever looking for votes.” Otherwise, some part of your focus has to be on “how am I going to get re-elected”, she points out. “Whereas I was parachuted in and I knew I had five years to put my head down.”

She took the opportunity to do a lot of work on charity regulation, an issue “very dear to our hearts”. They always felt when asking people for money, there had to be total transparency, that was notoriously lacking in some other organisations.

Both of them were involved in the founding of former Fine Gael TD Lucinda Creighton’s new party, Renua, in 2015. Jonathan had decided he wanted to run for political office, but it didn’t happen. Partly because of his illness, says Mary-Ann.

“Things were beginning to go wrong. It started slowly, but unfortunately caught up on him.”

His cancer was controlled, but it destroyed his ability to walk and to digest his food. He went from a man “larger than life, who loved restaurants and loved going out with people”, to constantly needing to sleep and hardly able to eat in his final years.

She became his carer. “As he said, ‘not a great carer’ but a ‘great organiser’ because I did have people to help me.” But she was alone in watching the love of her life fade both physically and intellectually.

“We used to ‘eat’ newspapers at the weekend and we would discuss everything on the planet. We were very stimulated by each other’s conversations, great readers. And I really missed that in the past couple of years. He was my pal.

“It was grief on the drip,” she reflects, before quickly switching to some positives. “I have a great house and kitted it out to the last, without looking like a hospital.”

Jonathan “was so sweet and so polite and so grateful” during these being-cared-for days. He would look out from his bedroom over the trees and river Nore nearby – “and I had a garden out there on the balcony for him” – and he would say, ‘I’m so lucky’. Whatever he wanted, within reason because he was a diabetic, I got him.”

Despite his failing health, she thought he would live another 10 years. “It’s ridiculous because the man was 82, but it was like I was hit by a truck. I am only really coming to it now.

“But we are very lucky to have had what we have,” she says, rising from her chair to rescue a wool hat she has noticed is being quietly chewed by Ruby the bulldog in her bed. Mary-Ann and Jonathan did not share the same regard for her canine companions, who are clearly central to her getting on with life. Although he wrote in his memoir that he and Mary-Ann, “never fight”, he did admit to getting “quite cross” over a Chihuahua she had bought and he hated.

We always have to be careful that we can meet our financial commitments because we never say no and we never want to say no. But we are hugely reliant on the very generous public

“I swear to God he nearly divorced me over it,” she laughs, recalling how Lily had wanted a Chihuahua and how she, as a “typical working mother”, had granted her wish. “Jonathan tolerated dogs but he could not understand my adoration of the dogs. He accepted it in the end.”

Visiting him in hospital the day before he died, she told him the dogs were all asking for him. “He said, ‘tell them I can’t wait to see them on Monday’,” she recalls, once more lapsing into his plummy tones. “He was very funny. He’d say, ‘Mary-Ann’s a nightmare and this house is like a kennel’.”

On the morning of December 10th last, when he was due to be discharged from hospital the next day, he told the nurses he wasn’t hungry and they said they would come back to give him a drip to rehydrate him. “He put his head back on the pillow and...” Mary-Ann clicks her fingers to finish the sentence. “A great way to go; no idea he was dying.”

But so sudden for her and their children – Lily, who lives in London, Phonsie, who lives in Dublin, and the youngest Molly, “a blessed arrival” after Jack’s death, who had moved home from Amsterdam shortly before her father died, but will be leaving for London soon.

“I miss him terribly but I am delighted for him,” says Mary-Ann. “I now realise the awfulness he was going through and how debilitated he was. Nobody should have to end up like that, particularly someone who relied hugely on human connection to give him his joy.”

It took her longer to embrace that sentiment of death as a release after Jack’s death. “The first year it’s almost like you’re selfish; you still want the baby, to hold the baby, to love the baby and he was a beautiful boy, but he was never going to be... kicking ball. His future was very uncertain.”

After losing two babies, it was Jonathan who pulled her along. But the death of his youngest son from his first marriage, Sam (18), who had spent every summer with the couple from about the age of three and was, says Mary-Ann, “a bridge between the two families”, nearly broke Jonathan. “He cried every single day for a year. He was inconsolable. Then he got up one day and said, ‘I have to turn this around’ and he did.”

Mary-Ann finds comfort in keeping busy. After the deaths of her sons, she got through it being a “workaholic”, now it’s “moving, moving” – outdoors and immersed in nature. “Get my ass out of bed and get outside is my way of coping.”

At age 63, she still has quite possibly a third of her life in front of her. “I do still work but nothing at the level I used to.” But she is always on hand to do anything for Jack and Jill.

The real success of the charity they created, she believes, is its sustainability, as evidenced by its latest milestone and, in recent years, extending the age of children it can support from four to six and providing end-of-life care at home for all up to six years old, irrespective of diagnosis. However, fundraising continues to be a daunting mountain to climb every year, with the Government providing just 22 per cent of the charity’s €7.5 million annual budget.

“We always have to be careful that we can meet our financial commitments because we never say no and we never want to say no. But we are hugely reliant on the very generous public.”

Jonathan has gone but she knows he would want her to say straight out that it would be greatly appreciated if anybody reading this could make a Easter donation or visit one of its 16 charity shops to buy and/or hand in items no longer wanted. “We love the circular economy.” Then straight after Easter, on April 4th, the catalogue for its eighth, ingenious Incognito online art sale will go live (incognito.ie).

For Mary-Ann personally, who repeatedly stresses how lucky she is to be financially secure and surrounded by good family and friends, the immediate priorities are to “stay alive; get healthy and well. I am a bit shaken.”

Once she feels fit enough to “get back out there – you don’t know what will happen”.

As the interview winds up, she turns to say “well done, dogs”. They were all on their best behaviour following a morning walk. “I warned them,” she smiles. After I leave she will head off with the four of them again, to the far end of the estate.

Keeping on the move: her tried and trusted antidote to grief.

Jack and Jill by numbers

• 26½ years since charity was set up
• 3,000 is the total number of families supported with nursing care up to this month
• 534 families helped in 2023
• 80 hours a month nursing care can be funded for a family
• €7.5 million needed each year to run the services
• €1.7 million comes from State, the rest from the public