SARAH Gibson O’Gara’s nine-year-old son, Martin, has never been in a supermarket or shopping centre. “We call him our little house plant,” says the Wicklow-based mum of two.
Lockdown wasn’t new for Sarah, husband Marty and their sons. Martin has severe cerebral palsy – brain-damaged at birth, he’s totally reliant on tube-feeding, suctioning to keep his airways clear and 24/7 oxygen.
“He’s on the flat of his back – he can’t sit or stand. He’s non-verbal and doubly incontinent. He’s completely dependent on us – no other family member could care for him, the level of care’s so great,” says Sarah.
With chronic lung disease and recurring pneumonia, Martin’s at high infection-risk and cocooning’s a concept long familiar to the family. “Come winter it’s a bit of lockdown. We’re careful where we go and who comes into the house.”
But Covid-19 raised the bar higher. “We’ve been hugely dependent on others for shopping and Martin’s medications – our home is like a mini-ICU. I didn’t go outside our gates from March until a day last month when I took Patrick, seven, to the beach two minutes walk away,” says Sarah.
LauraLynn – Ireland’s only children’s hospice – has been there for Martin since 2011. Providing tailored hospice/palliative care to children with life-limiting conditions and their families across Ireland, LauraLynn continued to provide end-of-life and crisis care on-site during lockdown.
But routine respite stays and short family breaks at LauraLynn House were suspended in March. LauraLynn’s now developing a re-opening roadmap, working with families to determine when/how they’ll be able to return for routine respite/family stays on-site – and on measures to ensure everyone’s safety.
A LauraLynn spokesperson says, at start of lockdown, most families using their crisis care were those where a primary carer had contracted Covid-19. Now many are availing of it due to exhaustion. “Parents have been caring for their children with many of their usual care supports cut off.”
“We really miss LauraLynn,” says Sarah – the family uses their annual 15 days respite to spend quality time with Patrick.
With Martin’s milestone 10th birthday in July (“we never thought he’d make it”), the family had hoped to celebrate at LauraLynn, “with all the little pals he has met over the years and the families and staff we’ve all got close to”. She hopes it’ll happen at some stage. “We’d love LauraLynn to be part of it.”
Donate at www.lauralynn.ie