EoinDuffy

House of sunshine… a very special respite centre

Eoin Duffy has many medical needs, which his family provide lovingly. His mother, Fiona, tells Joy Orpen that once a month they get a little break when Eoin heads off to a very special respite centre

Suzanne House is a vibrant holistic centre that takes care of children living with severe disabilities, in order to give their often exhausted parents and caregivers an essential break.

It’s housed in a modest building which is somewhat out of kilter with neighbouring architectural developments. There’s also the fact that the ethos here is as different from the vying-for-business commercial hub nearby as a warm summer breeze is from an Arctic wind.

It’s definitely a happy house, even though the temporary residents and their guardians face huge challenges. It’s testimony to the fact that while everyone involved in this crucial facility has to overcome obstacles on a round-the-clock basis, everything has to be done with integrity, dignity and love at all times.

Someone who absolutely ascribes to this theory is Fiona Duffy from Meath. She is mother to Ciara (10), Eoin (eight) and Ava (four).

Soon after Eoin was born, she began to notice that he occasionally experienced episodes of twitching. “Startled reflexes is the correct terminology,” explains Fiona who has 20 years of experience as a HSE caregiver, some of it in the disability sector. When baby Eoin went for a routine check-up, it was discovered his head was smaller than it should be, so he was referred to Temple Street Children’s University Hospital, where he underwent a week of tests.

“The neurologist told us from day one it was very serious,” says Fiona. “She said he was a very sick little boy.”

In spite of the best efforts of medical staff at this renowned children’s hospital, no conclusive diagnosis has ever been made. But that doesn’t change the reality of the situation, which is that this now eight-year-old needs constant care and attention.

“As a baby, he began having feeding issues,” explains Fiona, “and he ended up having to be Peg [tube] fed. He has had a lot of chest issues; he has poor muscle tone and is doubly incontinent. Making matters even more challenging is the fact that Eoin’s brain doesn’t interpret what his eyes see.”

Nonetheless, this loving family have their own way of relating to their special boy. “We’re able to communicate with him on his good days,” says his devoted mum. “But it all depends on how he’s feeling. When he’s in good form, he’s great; but those days are few and far between, I suppose.”

Fiona is Eoin’s principal carer. “I gave up work to look after him,” she says. “I didn’t have a choice. There’s no provision to keep your job.” Hearing her talk about Eoin, there is the sense that even if she did have choices, she wouldn’t do anything differently, such is her unselfish dedication to all her children.

The Duffys have a HSE care package, which means that for a certain number of hours each week, qualified nurses care for Eoin in his own home in Meath. “I’m very lucky with the nurses,” says Fiona. “One has been with us for six years, and another for five. They’ve become part of the family. I use the hours to suit us. I have a nurse only one night a week.

“Having the nurses during the day allows me to spend time with my girls. Nonetheless, they don’t do many extramural activities, as Eoin gets sick quite a lot. Ciara does horse-riding, and Ava does drama, and that’s basically it. I just can’t commit to doing things at specific times. It’s hard enough to do the normal things that most people take for granted, like grocery shopping.”

Fiona says she and her husband, Neil, have learned over the years how to care for their son’s many health challenges at home. Among myriad equipment, they have oxygen tanks, a suction machine, a nebuliser, and a machine that records Eoin’s vital signs. He’s also tube fed and requires a cartload of medication every single day. When there are no nurses present, Fiona and Neil do it all themselves.

“When Eoin’s unwell, we try to manage him at home for the first 24 to 48 hours,” explains Fiona, “because it’s so much harder for the girls when I am with Eoin in hospital. So it’s full-on for the first couple of days.”

But once a month, for three days and three nights, the Duffy family get to lead a relatively normal life. That’s because they know that Eoin is in the very capable hands of experienced staff at Suzanne House, which is part of St John of God Community Services.

“We provide respite care for children from one to 13, who have life-limiting conditions,” says clinical nurse manager Niamh Cooney, during a recent tour of Suzanne House. She says the individual likes and dislikes of each child are noted. When they come for respite care, they are given their favourite room, toys, treats and activities.

However, given the limited space and staff complement, the centre can only cope with four children at a time, three days a week. But this also means that the small staff know and truly understand the individual needs of each child.

“Eoin was probably five before I agreed to put him in the hands of strangers,” says Fiona. “I have to admit I have high standards. But I do like the continuity of care here. When I leave, I know who’s looking after him. They know him well enough to know when he’s having problems. Niamh genuinely cares; she’s not just a manager who manages, she’s really hands-on.”

Suzanne House, even though space is very limited, has everything imaginable, from a sensory garden to a wheelchair-accessible playground and high-tech medical equipment. But they also have sparkling lights, spa baths, massage, music, crafts, the smells of cakes baking, flowers, laughter and love.

So, when Eoin is here, Fiona and Neil can relax a little. “I use the time to catch up,” she volunteers. “It’s great to be able to make a spontaneous decision to take the girls to the park, or to be able to sleep at night knowing I don’t have to listen out for Eoin.”

Fiona, a normally very private person, is so grateful for her son’s home away-from-home, that she is prepared to talk publicly about their journey with him thus far. She and Neil also raise funds for this much-needed facility. “I wouldn’t do that unless I could see where all the money went,” she says. “Every last penny goes to the home.”

If Fiona rates Suzanne House so highly, then so should everyone else.