LYNDA Duffy, whose son Mark suffers from a severe form of cerebral palsy, counts herself lucky compared to other families in similar situations.
Mark (10), from Cabinteely south Dublin, is cared for at home but receives a week to 10 days' respite care in LauraLynn children's hospice every month.
"Mark stays overnight and he is brought to school by bus. He is entirely dependent and fed through a peg."
Lynda, who is a primary school teacher in Taney, Dundrum, is helped out by her mother for a few afternoons a week.
On other afternoons he goes to another respite facility, Angel's Quest, and on others the family gets three hours' help from Rehab care.
Four nights a week, the HSE provides a nurse to look after Mark because he is in danger of going into a very deep sleep, with the risk that he could stop breathing or suffer a seizure.
"They (the overnight nurses) are fantastic and they will get him up in the morning. It is full on and takes an awful lot of organising," she said.
Lynda also has two other children, Conor (5) and Katie (3). "They are now getting to the stage of wanting to get out and do things. My husband Mark is at home at the weekends and he can take them to the park.
"The overnight at LauraLynn is wonderful to give us time and space as a family.
"When Mark is in LauraLynn, we are out at McDonald's or at the cinema."
It is vital that they continue to get the support they have in order to keep going, she added.
"I appreciate that there are other similar families around the country who do not have what we are getting. I don't know how they are surviving.
"The ideal for us would be to have a bed in LauraLynn for when we want it. And then to have the nursing care at home when needed. But I know that is never going to happen.
"It is a huge break when he goes to LauraLynn but then we miss him in the house."