‘It’s a constant battle. My kids have needs. I’m their voice. It needs to be done’

“Some people think because we have nurses, you can have the day off but it’s not like that. It’s like a mini hospital or a mini residential unit here.” Rita explains. “I’m working. I’m always working on the team. There are no quiet moments. Always some sort of job to be done. A routine. If you follow it, you are fairly ok.”

As part of a documentary series that aired on Virgin Media Three called Ireland’s Forgotten Families, Rita describes the relentlessness of non-medical costs associated with caring for a sick child.

Rita was only 23 when had her daughter Shona. “She was around two or three when we noticed her speech wasn’t developing, she was floppier than perhaps she should have been. Then I was pregnant with Tom and I was told there was only a 10% chance of it happening again.”

Rita had received such rare diagnoses for her children that she still hasn’t come across anyone with the same translocation.

Love

“Lily has defined medical science. For the number of medical issues she has, she should be sitting in bed instead of out and about with us. Shona has a very serious cardiac issue. She wouldn’t be able for the multiple surgeries which means she is a life-limiting case.”

It’s not easy to discuss the declining health of your eldest child. Rita breaks down as she explains Shona’s prognosis.

“You can see the slide in her health. That’s the heartbreaking thing about it. You can see the slide… The doctor said to me just make sure she does something she likes doing every day.”

 

 

A few years after Rita had her three children, her marriage broke down. She met Patrick Dobbs and they had two children – two boys, now aged 6 and 8, both neurotypical. Patrick says it was Rita’s smile that initially drew him to her and the children. “The disability part didn’t come into it. If you love someone you take them as a package.”

Relentless

Cliona’s Foundation is a national organisation providing financial support for families who are caring for a child with a life-limiting illness. The foundation was set up by Brendan and Terry Ring following the death of their own daughter Cliona from an inoperable brain tumour in 2006, aged just 15.

Cliona’s Foundation has provided financial support to over 1,000 families across the island of Ireland, families just like Rita’s. Brendan says that no family should suffer financial distress while caring for a seriously ill child.

“We know that every year 400 families get devastating news child has a life-limiting condition. In 1998, we got that same news about our daughter Cliona. We also know those families require around €10,000 net to support their child while they are going through that period of time. We can’t give the funding to families that they need. We are only giving a fraction of what’s required. There’s a lot more we should be able to do. It’s not enough.”

 

In Rita’s case, the foundation was able to contribute to the cost of a generator for the family.

“Around the time of the snow or one of the storms, we went 10 days without electricity. If you think about all the bypass machines, the air mattresses… all those nights we were up every hour and a half to fill a small generator with petrol. And that was only to power one child. The generator is worth its weight in gold. I’m just so thankful to Cliona’s Foundation for their involvement. I don’t know what we would have done otherwise.”

Support

Rita says it is hard for others to understand what her life is like. When I ask her where she gets her strength she explains she feels she has no other option.

“I’ve come from a long line of strong women. But I suppose if you think about something, you can sit in a corner and cry. But who wants to look at that, you just get depressed. Instead, I strip it down. I have all these suitcases in my head. They need to be opened one by one. I’ve currently 500 in my head. I open one and deal with it. Then the next. It’s a constant battle. But my kids have needs. I’m their voice. It needs to be done”

Rita says that for now, she just takes it one day at a time.

“Nobody likes a whinger. That sounds harsh, I know,  but it’s the truth. It is tough, but you have to have a strong mental ability. Plus I love my children. I’d do anything for them. Yes, they have their issues, they go through a lot. But they are happy. Ultimately, they are happy. And that’s all that matters.”

Cliona’s Foundation and Trilogy Media hope that this documentary will raise awareness of the thousands of families who face these difficulties every day. The overriding theme throughout the programme is how we all, as families, can overcome our challenges through kindness, love, and dedication. 

This article was originally published in April 2022.