Rosemont's The Lighthouse offers a safe path for families of terminally ill children
Published Thursday, December 27, 2018 2:19PM EST
Living with a terminally child can be emotionally, mentally and physically exhausting but Rosemont’s The Lighthouse – the only personalized pediatric palliative care centre for children in the province – has been making life a bit easier for hundreds of those families.
The centre, which runs primarily on donations, supports more than 300 families at any time.
“Our daughter loves it here,” said Grahax Baxter, whose daughter Eloise was born with a rare syndrome that caused her to be severely disabled and in need of chronic care. “We just brought her here this morning and she smiled, so she knows where she is.”
At The Lighthouse, Eloise is able to play and be taken care of at the same time.
“We make sure that these kids get to be kids, not just sick people or not just children who are struggling,” said The Lighthouse assistant director Stephanie Barker. “They get to be kids and their parents get to be parents, not just caregivers or providers.”
Each day, dozens of nurses, caregivers and volunteers come to make sure what time the kids have left is the best it can be.
“It’s not about what’s going to happen tomorrow and sometimes it’s not about what’s going to happen in an hour,” said Barker. “It’s about what’s happening here and now.”
The centre also offers symptom management, end of life services and bereavement support for the families.
“We had a mother who’s been taking her child for respite services for a few years now, who has slowly started to gain control on her day-to-day,” said Barker. “She started painting to relax and to take time off and just concentrate on something she can create. She painted Wonder Woman and she did it so nicely and beautiful that she gave it us to auction off. A donor bought it, gave it back to The Lighthouse.”
While the work can often be emotionally devastating, caregiver Sebastian Estevan said it can also bring people together.
“When you’re inside, you don’t see it that way, there are some periods that are obviously tougher, but we live day-to-day and our main focus is bringing joy to these kids and making them happy,” he said.
It’s something that’s much needed for families like Baxter’s.
“Not to use the analogy literally, but a lighthouse is the safe passage and that’s what The Lighthouse is for us,” he said. “It gives us safe passage for our family and for our daughter.”