It is hard for Niamh O’Shaugnessy to spare her three-year-old daughter, Indie, from the raw reality of having a little brother with a life-limiting condition.
Two-year-old Ollie, who was diagnosed with spastic quadriplegia cerebral palsy last May, regularly has epileptic seizures. As the only adult in their Belmayne home in Dublin 13, Niamh has to reassure Indie when Ollie is having a seizure, while simultaneously attending to him.
“You have an upset three-year-old not knowing why her brother is lying there, shaking,” says the 27-year-old, mother, whose relationship with her children’s father broke down soon after the Ollie’s birth. “Unfortunately, I can’t take my daughter out of that situation. Sometimes she has to see things I don’t want her to see. But then why hide her family, because this is her brother? No matter what age she is, this will continue to happen.”
Childhood is inevitably different for siblings of a child with a life-limiting condition. “The positives for them are they have a huge amount of empathy and compassion,” says Sinead Moran, nursing manager with the Jack and Jill Children’s Foundation. “They see the world very differently. The negative is they want the normality of life and they don’t have it. They have to adjust to a new norm, which is very difficult.”
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There can be jealousy when the child with special needs always takes priority. Siblings have to live with the fact that birthday celebrations, outings and holiday plans can be swiftly cancelled if that child gets sick.
During 20 years working with Jack and Jill, which funds home nursing care for more than 400 families, she has seen that siblings need to be kept informed, in an age-appropriate way, about the child with the disabilities. “Siblings want to help, they want to care, they want to be told what is wrong with them,” says Moran, who did a thesis on the impact of having a brother or sister with a life-limiting condition for a masters five years ago. If they’re kept in the dark, they will be constantly worrying.
Parents feel guilty because they can’t give time to both. “I suppose that is where I have seen the difference our hours make,” she adds. “It allows them to give that time.”
Niamh, as a single mother, uses many of the hours of nursing care for Ollie to spend one-on-one time with her daughter. Having had a difficult childhood herself, she is intent on teaching Indie “to be grounded in herself”.
“I grew up around trauma as a young child,” says Niamh, who went into residential care. “I see these things with Indie, having a special-needs brother, that this could trigger a little trauma for her, when she is six or eight. She is a really intelligent little girl, in advance of herself. She picks up on everything: emotions, actions. She is very in tune, which is brilliant, but sometimes I think she takes on too much by being in tune.”
Indie adores Ollie, whose “smile lights up a room”. She likes to introduce him to people, explaining “this is my brother, he has a tube”, referring to his nasogastric feeding tube. But Niamh does not want her to feel burdened with responsibility. “I like to have conversations about her mind, her body and her soul. I know a lot of people look at me in a weird way when I say that about a three-year-old.
“I feel if I didn’t have Jack and Jill, I would not be able to put so much time and effort into that with Indie. It is huge to me.”
She says she likes to do activities with her daughter that are free and involve nature, “so she can continue this way of life when she gets older. I don’t want her to feel when she’s overwhelmed that she needs to go and get her nails done.
“Me and Indie like to go and get our nails done as a treat,” explains Niamh, a beauty specialist, “but I always let her know it is a treat and would not be a regular thing.”
She wants Indie to grow up knowing that the best way to deal with mental pressures is to go for a walk or a jog.
Niamh also uses some of the 60 hours a month respite to take time for herself. It means she can have at least one day a week when she doesn’t have to be a carer. “I am very grateful to be able to do this for my son, but at the same time, us mothers need a break – burnout and exhaustion is a real thing.”
Early on in Ollie’s life, Niamh really struggled and wasn’t eating. “I was down to 52kg [8st 2lb] and my shoulders and back were physically sore. I remember sitting down and crying and saying this can’t be my life, just being at home, like a robot.”
Broken sleep is a constant challenge. “Ollie is awake at 5am every day, and will also wake up during the night and be quite stimulated.” The noise may wake her daughter too.
Indie attends a creche, which is a great social outlet for her, says Niamh, who has just one sister in her life and she doesn’t live nearby. Undoubtedly, there are times when her daughter feels jealous of all the attention her mother has to give Ollie. “I think Indie can get quite annoyed with my attitude. She is a three year old and she will cry for silly things and I am the type that says, ‘Do you know how lucky you are that you can do that? Because if your brother could do that...’ And she will kind of go ‘humph’ – as if to say, ‘I didn’t ask you for that opinion,’” Niamh laughs. “It’s about giving Indie that selfish time in a healthy way. It is really, really hard to balance that.”
But she is philosophical about the challenges life has thrown at her, both as a child in care and now as a parent. “I haven’t got the support of a mam and dad through life.”
But, “I have learned that life is beautiful and it’s what you make of it. Just because people have let you down, you don’t need to let people down. You stay true to who you are – that is how good comes.”
Registration for the Incognito 2023 art sale, in aid of the Jack and Jill Children’s Foundation, opens on March 31st. Each postcard-sized original artwork costs €65 but the identity of its artist is only revealed after the sale of the 3,000-plus individual pieces take place on April 26th. See incognito.ie
