Children of Jack and Jill: ‘You worry you might get that call’

Catherine is the nurse that Willow and her family have been assigned by the Jack and Jill Children's Foundation. Catherine is holding Willow on the couch beside me. Willow's mother Tracy and the organisation's children's liaison nurse Anne Reilly are sitting on another couch in the Carrolls' large, bright kitchen/sittingroom in Co Meath.

The Jack and Jill foundation was founded in 1997 by Jonathan Irwin and his wife Mary Ann O'Brien (who founded Lily O'Brien's chocolates) after the experience of caring for their very disabled son Jack. "That was 23 years ago and they were told there was nothing there to support them," Anne explains. "Jack died at 22 months old. Jonathan could have closed that chapter of his life, but he didn't."

The foundation provides support and nursing care for very sick and disabled children living at home. Willow had a catastrophic brain injury at birth. Tracy shows me a picture of Willow immediately after her birth when any problems were not yet apparent.

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Nurse Catherine Fullerton with Willow. Catherine is a nurse that the Carrolls have been assigned by the Jack and Jill Children’s Foundation. Photograph: Tom Honan

“That picture haunts me,” she says.

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Some medical professionals in the hospital held out little hope that Willow would survive. “We were told she’d be deaf and blind and that she’d have no suck or swallow, that she’d just be a vegetable.”

Right now, Willow is hanging her head backwards over Catherine’s arm, her face is upside down and staring up at me with curiosity.

“Hello,” I say.

“That’s her vision line,” says Tracy. “She has a vision impairment so it’s easier to look at you like that. She’s as cheeky.”

The early days were overwhelming, she says, and relatives didn’t know how to help. “We were waiting for her to die as far as we were concerned. I fell out with my parents for a while . . . I was angry and God help them I was giving them the brunt of it. That’s when Anne came in . . . She just managed everything.”

Anne manages referrals for Jack and Jill in this part of the country. “I have 35 families on my books between my five counties. There’s a Willow or an even sicker child or a dying child in just about every parish.”

There were times I used to lock myself in the bathroom and collapse

The situation puts a huge strain on a family. Tracy and her husband John both struggled as did their son Noah who was only a toddler. “There were times I used to lock myself in the bathroom and collapse. Imagine your three-year-old son picking you up from the floor. Jesus Christ, the guilt . . . Noah had his childhood just ripped from beneath his feet. We expected a 2½-year-old to become a 10-year-old.”

At that time Tracy was just hoping that Willow would live until Christmas Day. “I remember getting Noah up and looking at all the lights on the tree and trying to make this little family Christmas, trying to make the most of everything.”

When did Catherine first come to help? “The first day I came in you just needed someone to mind her because you needed to do Christmas shopping,” she says. “I thought I was coming just for a day.”

“I think we came home early too,” says Tracy. “This little lady was supposed to get her wings. You worry you might miss something. That you might get that phone call.”

But Willow survived despite the odds. “For some reason, I knew the minute I saw Willow, this little lady ain’t going anywhere,” says Anne.

Willow sleeps in the big kitchen/sittingroom and Tracy sleeps in a foldout bed alongside her. As Willow gets older they will need to adapt the house. Willow receives her medicine and is fed through a tube because she’s not really able to swallow safely. Tracy shows me the different medicines that Willow needs to get several times over the course of a day starting at six in the morning – relaxants, anti-seizure medications. It looks very complicated.

Could someone untrained look after Willow?

“Yeah,” says Tracy and she laughs. “Me.”

“We study for years to be trained nurses,” says Anne. “These parents come home with huge tasks to do.”

Catherine is a trained nurse and has a day job as a midwife in a hospital. Her children are older now and she lives just 15 minutes’ drive away so she can work around Tracy’s needs. Sometimes she comes to Tracy’s house and sometimes Willow goes to her. “It’s like a family thing,” says Tracy. “Catherine goes above and beyond. I bounce off her for everything. She’s like a sister.”

What does Willow enjoy?

“Music,” says Tracy.

“The hair dryer,” says Catherine. “She loves the hairdryer.”

“She loves walks,” says Tracy. “The sound of the trees, nature.”

“Gerry singing to her,” says Catherine. “That’s my husband. He’s a good singer.”

Tracy’s life has changed completely since Willow was born. She stopped working (she formerly did accounts for a company). Last year, she and Willow spent May to September in hospital because Willow was having constant seizures. Willow has been better this year, but it’s still hard to make plans. Tracy and John recently managed a weekend away only after booking the hotel for the 19th time.

People can be insensitive. “Someone asked me last Christmas, ‘Would you be upset if you lost her?’ Sorry, what does that even mean? Willow is Willow. I don’t see this child that is so disabled she has no quality of life.

And he says, 'she can't walk' and I say 'no' and he says, 'but she can fly'

She’s the happiest little thing . . . You’d want see her with her brother, Noah. They have their own world. Noah says, ‘Willow doesn’t talk . . . But she does talk to me.’ And he’ll sit down there and talk to her. And he says, ‘she can’t walk’ and I say ‘no’ and he says, ‘but she can fly.’”

Willow gets some HSE carers hours and physiotherapy and occupational therapy and consultations with Enable Ireland, but the Jack and Jill service is the only thing Tracy feels as if she hasn’t had to fight for. Recently she did a skydiving jump, alongside her 77-year-old father, to raise money for the foundation. “Less than 18 per cent of our funding from the Government,” says Anne. “It takes €3.5 million to run the service.”

Tracy talks about the first year of Willow’s life as a grieving process that was compounded with each milestone that Willow missed. But she says she feels like herself once more. She writes a blog called Willow’s Way that has been helpful to other parents of sick and disabled children. “Last Sunday, we were all getting ready and Noah is bouncing on the bed laughing and he just said, ‘I love my family. We have a lovely family don’t we?’ . . . I just said, ‘Yeah, you’re right, we do.’ . . . Who said we have to be anything anyway? We are who we are.”

She turns to Willow, still in Catherine’s arms, and smiles. “Isn’t that right?”

Read: ‘I have hard days, days here crying over him for hours’