Niamh was taken quickly to Arka’s premises, where her eyes were removed by a medical technician that same evening.
“Sarah stayed with Niamh while the procedure was done,” says Gilli.
“That was a real gift, because then I knew it had been done really respectfully.
“The man operating told Sarah that Niamh’s eyes were beautiful and in great condition, so they would definitely be given to someone else. I was really pleased to hear that.”
The next day, Niamh was taken back home.
Keeping a body at home before a funeral is rare in the UK, but it is not illegal.
The most important consideration is temperature. Some funeral companies supply air conditioning units in the summer months to keep a body cool, and electric cold blankets may be used as well.
But in Niamh’s case, temperature was not an issue. It was November, so she was placed in a room at home with the windows open.
“She stayed there, lying on an armchair with her blankets and her cushions,” remembers Gilli.
“I couldn’t possibly have left her somewhere else. It just didn’t feel right. She’d just turned nine years old – it still felt as though she was part of me.”
Niamh would remain at home for nearly three weeks, with her eyes closed.
“We try and slow things down for loved ones, to give time to digest the news of a death. We don’t have a prescribed way of doing things,” says Cara.
In the days Niamh was at home, Gilli spent a lot of time with her.
“I was able to wash her. And dress her in her favourite things. The main thing for me was to make her death real.
“If Niamh had just disappeared out of the house, and then a coffin had arrived and I never saw her again, I’d still be searching…”
Gilli trusted her own instincts on this because – almost unbelievably – she had already experienced the loss of two other children. Her first child, Liam, died shortly after he was born in 1990.
“I remember asking to see him before the funeral, and the chaplain running the service wouldn’t let me.
“So for years afterwards, I used to think if someone knocked on the door, and said, ‘Oh, there’s been a terrible mistake – here’s your son,’ I would’ve just accepted it.
“It was as if I didn’t really believe he was dead.”
It preyed on Gilli’s mind that she had not had one last look at her son. “It made me think – why? Are they trying to trick me? You’re in such a strange state after the death of a child.”
In the UK, it is not common for family and friends to view a body in a casket just before burial or cremation. But Cara Mair says that for some clients this is important.
“When the coffin’s closed, they know they’ve been the last to see that person, so they can rest assured they’re undisturbed.
“It’s not the same for everyone – this might freak some people out. But the choice to do it needs to be there, and the funeral profession needs to be comfortable with it.”
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Cara Mair and Sarah Clarke-Kent encourage bereaved families to get involved in every aspect of the funeral process. Their company features in a forthcoming documentary called Dead Good. In this clip, a woman has chosen to help prepare a dear friend for his funeral.
In 1998, Gilli lost a second child, Robbie, who was still-born. She had learned some lessons from her first bereavement but the funeral service still seemed all wrong.
“It was too wordy for a tiny baby. And the funeral director had put in a lot of religion, which had nothing to do with me,” she says.
Gilli remembered a conversation she had with Niamh before she died.
“We were walking to the park with her twin, and she said she wanted to be buried. She didn’t like the idea of fire, and was adamant about that.”
But Gilli hated the idea of a graveyard – dark, and foreboding, and so unlike her shy little girl.
The family settled on a woodland burial. Gilli was not sure she wanted to put her daughter in a coffin, so Arka advised her that Niamh could be buried only in a shroud.
But at the last minute, her father changed his mind, and Niamh was placed in a wicker coffin.
“In the time she’d been at home since she’d died, she hadn’t really changed very much,” remembers Sarah Clarke-Kent. “She looked very peaceful and small.”
Niamh loved dogs. So on the day of the funeral, her street was filled with neighbours, friends, children and their pets.
“It was very moving how they stayed involved and in control of Niamh’s funeral, and it was a privilege to support them,” says Cara Mair.
She drove Niamh’s coffin slowly up the street followed by a walking procession of mourners and well-wishers.
The balloons were released, and then everyone got into their cars and drove to the woodland burial site.
The day has stayed with Gilli.
“It really did feel right.
“The funeral’s only the start of saying goodbye, but it’s such an important start – it’s the beginning of moving on to the next chapter of life without that person.
“And if death isn’t dealt with in a good way, the bereavement gets stuck, and that can affect your life and your children’s.”
Gilli’s family had an overwhelming response to their decision to donate Niamh’s eyes.
“A lot of people got in touch with us,” says Gilli.
“We have this cultural idea that the eyes are the windows to the soul, so it’s common for organ donors to write on their cards that they don’t want their eyes to be taken.
“Many people wrote to us to say they had changed their minds about that after hearing Niamh’s story.”
And when Gilli heard her daughter’s corneas had been transplanted successfully, giving sight to a teenager and a young man, she was delighted.
“It means a little bit of Niamh has lived on – that’s her legacy.”
On the night of 29 September 1994, seven-year-old Nicholas Green was fatally shot during a family holiday in southern Italy. The death was a tragedy for his parents, Reg and Maggie, but their decision to donate his organs caused organ donation rates in Italy to triple in a decade – a result dubbed the “Nicholas effect”.