After Cian’s respite stays at The Donna Louise, he proudly takes his newly-collected Moment Beads home to show his mum, Sarah. It’s a special moment together as she gets to see what fun things he’s being doing.
Cian is non-verbal and can’t tell his mum what he’s been up to, but he gets very excited showing her the brightly-coloured beads that mark activities and milestones in his Donna Louise story. The concept of Moment Beads was introduced by one of our nurses, Elisa, and are based on “Beads of Courage” used by children in hospitals to mark their oncology journey. Moment Beads help parents to understand how their child spends time at The Donna Louise.
Cian suffered a brain injury at 12 weeks old and, as a result, has uncontrolled epilepsy, a heart condition and visual impairment. He first came to the hospice 2 years ago as ordinary respite facilities were just not suitable due to his complex and multiple needs. Sarah explains what a difference it makes to them both, “I can relax knowing that Cian is being well cared for and that all his health needs are being looked after. He has so much fun when he’s there and he gets to try new things without mum being there all the time. It gives him a bit of independence which is important for him. – just like any teenage boy! And for me it’s a chance to have a little break. I’m a single parent and it’s exhausting looking after Cian. When he’s at the hospice, I can truly relax. Day-to-day life is full of feed pumps, hoists, suction pumps and medication. From early morning to late evening, I’m attending to Cian’s needs and then, even when he’s asleep, I can’t rest properly as I’m listening out for a sound from his monitors.”
Cian has a sister, Orla, who’s 19 and Sarah values the time that she gets to spend with her daughter whilst Cian is off having fun at The Donna Louise, “We potter about and just do ‘normal things’ like shopping. But all these things can be difficult to do when we have Cian in his wheelchair. Orla recently started driving lessons and I was able to watch her drive off for the first time – it meant a lot.”
“It makes me happy to know how much Cian loves coming to the hospice. And it means that I get a chance to find me again. Sometimes I feel as though Sarah doesn’t exist as a person anymore; I’m not me and I’ve forgotten who I am and what I ever wanted from life. My kids are my world and mean everything to me but sometimes I need to be more than Cian’s mum and carer – The Donna Louise gives me that.”