The mother of a terminally ill seven-year-old girl has pleaded with the public to show consideration for the vulnerable, saying she had to leave a park in what was her daughter's first outing in 11 weeks because it was full of families flouting pandemic health recommendations.
Earlier this week, Dublin's four local authorities came together to create a designated time for cocooners and the medically vulnerable to visit their local parks. 1.30pm to 3.30pm is reserved for the over 70s and persons with health conditions.
Yesterday, Daisy McDonald attempted to visit Bushy Park in Terenure with her mother Lynn.
Little Daisy is in the advanced stages of Rett Syndrome and is spending her final months with her mother and 11-year-old sister Ellie.
The family are without their usual nursing care for Daisy arising out of the Covid-19 pandemic.
"I am doing everything in my power to make memories at home with Daisy.
Lynn has to wake every two hours at night to give Daisy medication and Ellie, who has won a carer's award, is balancing homeschooling with nursing her sister.
Lynn says there was a palpable sense of excitement radiating from Daisy when they headed out the door after nearly three months to visit Bushy Park.
"She was genuinely looking forward to it. She is non-verbal but she communicates with her eyes. We got to the park and I said 'we are here now Daisy, we are going to go down and see the ducks'. I had her on the grass which is difficult in a wheelchair. The paths were full of people.
"Then I had to say 'I am really sorry Daisy. We are going to have to go home. It is just not safe.' She put her lip out and she started to cry. That broke me.
"I am doing everything in my power to make memories at home with Daisy.
"My 11-year-old has been doing shift work with her mum to keep her sister going - watching her sister so I can have five minutes to close my eyes or have a shower. It is genuinely too much for her. We can't see my parents. We miss them so much."
Lynn says that being a single carer is the "saddest loneliest existence".
Daisy is currently in a full leg cast as she incurred a fracture five weeks ago while she was being hoisted on to her bed. This is the second time she has sustained this injury.
"Trying to wash Daisy now is a massive ordeal. I have to hoist her over the bath. I have to put her leg in a black bag. I am trying to wash her hair which is very difficult because Daisy has a sensory issue where she is constantly moving at the back so her hair gets matted at the end of the day. So it has to be washed. You have got to do it every day."
Lynn carried out a full risk assessment on the nurses who came in to Daisy and found that it was not safe to have outsiders assist with her care during the pandemic.
"It pretty much has to be someone who is cocooning for it to be safe enough for them to come in. Even a miniscule risk is too much."
Daisy adores music. Lynn recently found a Facebook group called 'Music for Mad Times'. Daisy and Lynn learn a new song every day and they upload it. They are grateful for the input of musician Glen Hansard who they say has been exceptionally kind to Daisy during her short life.
"Last Friday we did 'Formal Friday'. I got Princess dresses and we dressed up. That lasted about an hour. We try and sit out in the garden. It is trying to find little things that will make her smile.
"When Daisy broke her leg we let her friends know about it on Facebook. The cards started coming five weeks ago and are still coming from across the world.
"That has been exciting for her. When the postman comes we hold on to the cards for 24 hours and then she can open it."
Lynn says that being a single carer is the "saddest loneliest existence".
"Life won't resume for us normally.
She misses the support of the nurses who normally come in and is particularly appreciative of a nurse called Sarah who drops off shopping. Nurses, she says, almost become part of the family.
"The loneliness is there even if the restrictions weren't in place. You still feel like that. There is very few people who understand the battles you constantly have to deal with. I miss having the nurses to talk to.
"There is nothing I won't do for my girls. I adore them both equally. I would go to the ends of the earth to bring them a bit of happiness."
Lynn says the vulnerable are forgotten when it comes to the lifting of restrictions. She says she is fully supportive of the Covid-19 restrictions but says realistically she does not know when the family will ever leave the house again.
There is no mention of the vulnerable in society during the 5pm press conferences, she says.
"To be honest I am exhausted. I am worn out. As a vulnerable group in society we have been forgotten from day one. Even in the phasing there hasn't been a mention of individuals with vulnerable conditions.
"Life won't resume for us normally. Parents like me know this is the long haul. Until there is a vaccine we will be living on tenterhooks.
"That is why those two hours in the park would have been immense. When we went there was families with their picnics, a football game going on. People cycling around.
"It is two hours out of 24 that were designated for us. A lot of people are saying they were not aware. People need to realise how badly needed this is for people like Daisy."
In January, Daisy was discharged from hospital with an expected 24 hours to live. But Daisy defied the odds and reached her 7th birthday in February.
Lynn set up a Go Fund me page to pay for private nursing at her home in Templeogue.
