At last, a lifeline for our Dara
As Ireland's first children's hospice is opened by the President today, Celine Naughton meets one family whose little boy is already enjoying the care home
Two-year-old Dara MacIonraic loves his new home from home, particularly the playground with its specially designed swing which can accommodate buggies and wheelchairs.
Dara can't speak, he's got a tracheostomy tube to help him breathe and another tube to pump food directly into his stomach, but his smile lets everyone know when he's having fun.
Today he's doing arts and crafts indoors with two other little boys and later he'll watch his favourite Pingu DVD in the leisure area where even the walls have brightly coloured shapes to pull, push, press, squeak and twist.
This is LauraLynn House, Ireland's first hospice for children and their families, at the Children's Sunshine Home in Leopardstown, Co Dublin.
Dara was one of the first children to move in last week and his mother Deirdre says it's a lifeline.
Since Dara, her third child, was born prematurely at 27 weeks, he's needed round-the-clock care and the cosy family life she'd envisaged is now regularly punctuated by a series of appointments with therapists, doctors and other specialists.
"It's hard work," says Deirdre. "Because Dara was so premature his lungs didn't develop properly and he's susceptible to chest infections, he's on a ventilator four-and-a-half hours a night and regularly needs to be suctioned. But for someone who doctors said would never walk and most probably be severely disabled both mentally and physically, he has certainly proved them wrong.
"He's a bright, busy little boy who lets us know what he likes, he can move about the room holding on to furniture and he flies around on his walker."
One of the hardest things for Deirdre and her husband Colm is not knowing the exact cause of Dara's problems.
"Doctors were baffled by the 24-week scans when I was pregnant and they're still baffled," says Deirdre.
"When people ask us what's wrong with him, we can't say. Having a diagnosis would give us an idea of his life expectancy, but we don't have that, so we live from day to day.
"Dara dictates how life goes for us every single day. Some days are good and others begin with an emergency rush to hospital. It's hard, because we have two other boys, Sean (5), and Fionn (4), and they need our time and attention too.
"That's why LauraLynn House is so important to us.
"It gives us a chance to recharge our batteries and devote time to our other sons. Without it, Dara would be living in Temple Street Children's Hospital and, while it does great work, a hospital is not home.
"LauraLynn House is just like home, the staff are fantastic and I know he's happy here and well cared for. It gives Dara a break as well as us."
The MacIonraics are in a transitional care programme, designed to enable Dara to gradually become less dependent on residential care and eventually move home for good. He is due to make the move during Christmas week this year.
While it will be the best Christmas present they could hope for, Deirdre says there is no room for complacency.
"We currently take him home four nights a week, but the nursing package we get from the HSE will not increase when we have him home full-time," she says.
"We have to spread the same nursing hours over seven nights, so for instance, while we had a nurse from 9pm to 9am, we will now have to manage with seven or eight-hour shifts, so I'll be on till 11pm and Colm will get up at 6.30am to let the nurse off.
"Sunday night rates are double, so we've decided to do Sundays ourselves. I'll stay up till 2.30am and then Colm will get up and let me sleep."
Such a gruelling schedule is the harsh reality for parents of special needs children throughout the country and if Deirdre is sometimes affronted by the bank bailouts and golden handshakes to ministers and civil servants that she reads about every other day while her son's nursing care is spread thin, she puts those feelings aside.
"You have to get on with it," she says. "Sometimes I feel very angry, but I don't want to be bitter. There are cutbacks all over and things have to suffer. I just appreciate the wonderful support we have from family and friends.
"Having a seriously ill child is something you never think will happen to you and it has a huge impact on your relationships.
"Our living room looks like a mini ICU and there are always nurses or healthcare assistants in the house.
"I'm virtually housebound and my husband and I are like ships in the night. We hope to save enough nursing hours to get out once a month, just for a few hours on our own.
"One of the great comforts is knowing that LauraLynn House will be there for us if we need it, even after Dara comes home for good.
"From January they are offering us crisis care and occasional respite care, even a couple of nights every few weeks.
"They're always here for us and that is a great comfort and support.
"Hand on heart, I know we could not have coped without LauraLynn House and the Children's Sunshine Home."