Amazing mattress that allowed me to spend a precious week with my daughter after she died
most horrific thing for me is that she would’ve had to go to the mortuary. Embalming was the other option, which is horrible. How horrific – you’ve just lost a child and then have to go through that.
“The mattresses seem to be really rare, we were so lucky our hospice uses them.”
They took Daisy home for a night and then spent seven nights with her at Shooting Star Chase children’s hospice, where she spent so much of her life.
It has been a traumatic couple of years for the family. Stephanie’s husband of 23 years Andy died from cancer a year before Daisy in December 2015, leaving Stephanie as a single mum to Daisy, Theo, 21, Xanthe, 19, and Jules, 15.
Being able to spend the extra time with Daisy has been hugely beneficial to them all. Theo and Jules decided that the night with Daisy at home brought them enough closure, but Stephanie and Xanthe spent the rest of the week with her in the hospice, where they re-created Daisy’s bedroom.
Stephanie says: “My other daughter spent so much time with Daisy in the hospice, she painted her nails, did her make-up. After Andy died, she didn’t want to be there right at the end.
“But actually with Daisy, she said being able to spend time with her and dress her up in her favourite Princess Anna dress, from Frozen, and put all her toys around her was so healing.”
Now Stephanie is able to remember her daughter at peace.
“Daisy looked so relaxed at the end,” she says. “She had been in a lot of pain for the last few months of her life and was very tense. When she died, we all said how long she looked because she wasn’t tense any more. In my mind I have that beautiful picture, not on a ventilator and bloated from the fluid, with tubes everywhere. I have a nice picture. Had I not been able to have that, my last memory of her would’ve been before she went to the mortuary.” Stephanie speaks openly about death and believes that as a society we need to change our attitude to grief. “We shouldn’t be scared of death,” she says. “Maybe if parents of children who are life-limited knew they could take their child home and spend time with them in this way, it might take some of the fear of death away. “People can be taken aback because I talk very openly about death, but for me it’s really important. When I tell them how healing it was and how it was about Daisy being a little girl and not a patient, they see it. The problem we’ve got as a society is that there’s a huge taboo around death.”
Stephanie says many of her friends were scared of seeing Daisy after she died but found it was nice to see her relaxed and not in pain.
She says: “I sat there in the evenings with a gin and tonic, planning the funeral and she was just there with me. My friends came and we sat with her.
“It really normalised it. It felt like how the Irish do death – they have a wake and everyone comes to see the body. It felt so normal that we were preparing her for the funeral and saying goodbye.”
It is Children’s Hospice Week, which has made Stephanie reflect on how much she cherishes that extra time.
She says: “I know more than most that life’s short. I cherish every precious moment with my family, I remember happy times and I enjoy the little things, they really are the big things.”
Was This in the Plan? by Stephanie Nimmo, Hashtag Press, £12.99 ■