For Baylee Levy, a typical early morning involves the organization of over 100 pills.
Some are crushed to tiny pieces while around 30 capsules are taken apart and spread over applesauce before being served to her 24-year-old son Sar.
“Unlike pudding or cereal and other foods, applesauce doesn’t absorb the pills and take away their benefits,” says Levy as she explains Sar’s daily treatment.
Along with insulin injections for diabetes, Sar requires an array of pills everyday to deal with cystic fibrosis and cerebral palsy — which he’s had since birth.
Sar is non-verbal, but manages to get his message through via a communication board and pictures. His mobility is limited requiring him to travel by wheelchair whenever he leaves the family’s Bathurst Street and Steeles Avenue West house.
“But at home, he crawls everywhere,” Levy says. “In many ways, he’s like every other young boy. He’s active. He likes to go out and when he comes home, he heads for the fridge.”
Levy, a former childcare worker, recalls the difficult moments that arose before and after Sar’s birth. While his twin brother Gavriel was born naturally, Sar required an emergency C-section.
“It was a stressful time,” Levy says. “He was in and out of the hospital when he was a baby, and there was a lot of misdiagnosis until they found out it was cystic fibrosis that was affecting his lungs and digestion.”
Added to that, an infant Sar had also contracted meningitis.
“I was scared to get too attached to him because I was afraid of losing him,” says Levy.
Now she commits most of her time into looking after her son. After putting together his medication at 5:30 a.m., Levy dresses him, brushes his teeth, washes his face and prepares his breakfast. She isn’t alone in caring for Sar as Levy’s husband and son Gavriel help out, making sure Sar has his daily insulin injections.
Levy also receives aid from homecare workers at VHA Home HealthCare, who come in five days a week to give Sar a shower, sit with him for meals or just keep him company.
In return VHA has acknowledged Levy’s longstanding devotion toward her son. On June 6, the organization presented her with their sixth annual Heart of Home Care Award.
“A lot of people don’t understand the toll it takes on caregivers, informal or trained, and the amount of work that’s involved,” says Cheryl Perera, director of new ventures and community program at VHA.
She says that Levy’s unrelenting approach to caring for Sar was what brought her into the VHA’s spotlight.
“She doesn’t see it as work or some sort of epic sacrifice,” says Perera. “She sees it as something any mother would do for their child.”
Levy says that she’s flattered by the recognition as she reflects on her close, attentive relationship with her son.
“My life is looking after my son,” Levy says. “I just never knew you could get an award for it.”
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