A CHANCE TO PLAY OUTSIDE
At Spiral Garden, kids more familiar with hospital rooms can get lost in fun
Eric Polo is 9 years old and he has a titanium port in his chest for blood transfusions, a gastric tube in his abdomen, a cheerful demeanour and commanding presence.
“You better get behind me because this could go anywhere at any moment,” he says, putting his rebuilt hands to use sawing a piece of wood in the corner of an enchanting park behind Holland Bloorview Kids Rehabilitation Hospital on a brilliant day in July.
Digging into a bucket nearby, he hands out safety glasses to everyone around him. “Everyone get your goggles on.” It was Eric’s first day at Spiral Park, a facility supported by the Toronto Star’s Fresh Air Fund for children who, like Eric, are living with fierce challenges.
Born with diamond-blackfan anemia (DBA), a rare, genetic blood disorder named after the doctors who discovered it, Eric requires blood transfusions at Sick Kids every two to four weeks and spends 10 hours a day connected to a portable machine that removes iron from his blood to prevent it from building up and damaging his liver and heart. His mother has to hook him up every night. He sleeps with it.
“It is unbelievably hard to put a needle in your child every night and watch him flinch. But he is so brave and he tells me he wants his needle because he wants to keep living,” says his mom, Daphne Polo, 45.
Eric is one of 65 people in Canada living with DBA. His bone marrow does not make the red blood cells his body needs to carry oxygen from his lungs throughout his body. He was born with small thumbs that he could not use. They were amputated and his index fingers were stitched onto his hands in their place, in separate operations of nine hours and eleven hours and now he can operate with brio a small hand saw at one of the play stations.
Immense old trees, part of the city’s ravine system, line the pathways through the 1.5-acre garden off Bayview Ave., where artists and staff guide children at interactive play stations. They paint, work with clay or wood, garden, drum, sing or lie in the grass and watch the clouds. In the evening, they sit around a bonfire.
It can be difficult for children with special needs to have the opportunity to get outside, and the program at Spiral Garden gives them that chance, says creative co-ordinator Shannon Crossman.
The spiral shape of the garden is an ancient symbol for the inner soul moving toward an outward journey.
Half the children at Spiral Garden are developmentally typical, without the myriad challenges facing their playmates.
The garden is a godsend for Ellena Rochon, whose granddaughter, Savanah Edwards, 16, has congenital myotonic dystrophy, which causes muscle stiffness, wasting and weakness. Left to her own devices at home, Savanah would spend all her time on the iPad or on her computer, Rochon says.
At Spiral Garden, she is outside all day and loves to sing and play with the other children. This is Savanah’s second summer at the garden.
“She doesn’t want to miss her camp. She’ll do everything she can not to miss it,” says Rochon, who has cared for Savanah since birth. “She sees the other kids doing things and she just wants to get in there too.”
Eric runs all around Spiral Garden on his first day. He loves life. He loves being one of the guys and hanging out with his friends. He takes karate once a week and he goes to Scouts. He is very famous at his school, where everyone knows his name.
“My friends think he’s adorable,” says his sister Charlotte, 11.
He changed his mother’s life in the best possible way. Daphne used to have a demanding job as an executive assistant and worry about the perfect house, the perfect life. Now she works three days a week as an office administrator at her local church.
Her life is full to the brim with Eric and his sister Charlotte, 11, and how resolutely the community she lives in has supported them in the nine years since Eric was born, five weeks early, a medical puzzle for months, living in intensive care.
“It really has shown me how great the world is,” says Daphne.
Charlotte helps her mom and Eric. She loads the dishwasher and gets her brother ready for school. She packs his backpack.
“There’s nothing I don’t like about him. He’s always very happy, although he does have a bit of a temper. He’s so caring and loving.
“He always wants to get outside and be active. He always wants to play sports, even if kids are bigger than him. I’m really lucky that I have him in my life, honestly. He’s just normal to me.”
Eric loves Pokemon Go, Captain America and wolves.
Before I leave, he hugs me. He has another favourite thing he wants to mention — blue, the colour in my dress.
He points to it. Then, because he is 9, he says: “I’m going to poke you,” and jabs his little finger into my face. A lot. And runs off to play, under the shining sun and giant trees.