Reaching for the stars
I want Shayden to know that he could be anything he wants to be when he grows up. I don’t want anything to stop him
At their home near Timmins, Ont., Jacinthe Bourgoin sits at her kitchen table with her three-y ear- old grand son, Shayden, who she proudly raises as her own. Amid her laughter and his giggles, they’re trying to master the colours. “Okay, tell me the ones you remember,” she says. Shayden smiles. “Brown. Green.” He pauses. “Star!” It’s the funny kind of thing any toddler might say — except that forshayden, colours are things, not hues. He knows yellow because that’s what colour his mother says his toy star is. Shayden has never actually seen a star, yellow or not. From birth, he’s been blind dueto septooptic dysplasia, a malformation of the optic nerve that causes the normally separate midline of the brain to be fused. And because his pituitary gland isn’t fully developed, he doesn’t produce some of the hormones needed to grow normally.
Not that he notices. Although slightly small for his age and perhaps a year behind in general development, Shayden has several advantages other kids don’t. For one thing, from the time he was seven months old, he’s had support from CNIB, whose specialists are helping him navigate the world by teaching him to use a white cane and learn through senses other than his eyes. And beside him every step of the way are Jacin the, 44, a security guard, and her husband, Ted Hannah, 38, a paper mill worker, who have completely reordered their lives to ensure Shayden thrives. But it nearly didn’t start out that way. Born to Jacinthe’s daughter, Karissa, Shayden’s early life was fraught with difficulty. Five months into the pregnancy, standard screening found an abnormality and Karissa, then 17, was sent to Toronto’s Mount Sinai Hospital. There, an MRI showed that rather than having two sides, Shayden’s brain had a fused septum. How this would effect him became evident immediately after his birth, when he was rushed to the hospital’s NICU ( nursery intensive care unit). He spent 11 days in an incubator battling jaundice and low blood sugar, seemingly unable to gain weight. It was a time when Jacinthe says “the unknown looked and felt very scary.” Amid the panic, doctors confirmed that Shayden was blind. For six months, Karissa struggled to care for Shayden, but the young mother couldn’t do it on her own. So the family rallied together and over a registered As decided his she soon legal got as charity Jacinthe guardianship. in she touch was that with would given provides CNIB, take custody,
emotional people who and are practical blind or support partially to sighted “I made across CNIB Canada. my main contact
and eve organized ry thing through them. They are very supportive. They’ve helped with the tools I’ve needed, the work shops, the books.”
Last summer, the family made their first trip to CNIB’S Lake Joseph summer camp near Huntsville, Ont. There, children and youth who are blind or partially sighted can take part in everything from water sports to social activities to skills training — all in a safe environment built specifically for people with vision loss.
we “After learned being so there much. for The one week, staff, the volunteers, everyone was so helpful and friendly,” Jacinthe says. “We made lifelong friends.” In the mean time there are doctor’s appointments, play dates and early orientation at the primary school Shayden will attend next year, which should help his mobility. And when she gets the time, Jacin the has been doggedly working on a braille machine, laboriously hand- punching 30 books into braille, each taking about three hours. But the time spent doesn’t matter as much as the outcome, she says.
“It’s very important for him to learn braille. I want Shayden to know that he could be anything he wants to be when he grows up — even a reporter. I don’t want anything to stop him.”