Melody was born with cataracts on both eyes, yet after corrective surgery her parents, Souzan and George of Burlington, Ontario, thought her development would return to normal. But it didn't.
"She was not doing what other kids can do," Souzan remembers. "She was not walking, and still couldn't see. She can hear, but she still doesn't talk." Researchers whom her Ottawa doctors consulted in Boston were stumped. Melody is 14 now, and much smaller than most girls her age. She has continual care needs. It's an especially stressful situation for Souzan, who devotes all her time to caring for Melody and her sisters, age six and 10, while George travels a great deal in his work as an engineer.
The family moved from Ottawa to Burlington in 2004, when Melody was seven, and was quickly referred to ErinoakKids. "We were going to ErinoakKids for doctors appointments and physiotherapy, but then about three years ago we started using the respite camp. It changed our lives. We can do so much now. You can't even imagine what it's like. Melody has been the focus of everything in our family."
It's like that for many ErinoakKids families whose children have especially great needs, which is why respite care is so important. It has proved especially important for her sisters – average kids who have needs as individuals too.
"When I can't take them to the zoo or something like that – activities any girl or boy would enjoy – because Melody doesn't like it, that's stress," says Souzan. "It means so much to the girls to say we can drop Melody at camp where she has fun, so now let's go find something that's fun for the rest of the family."
This improves the relationships among the children, who equally need attention, outings and a sense of importance.
With respite care available at ErinoakKids, it seems to the family that all things are now possible. "I remember the first time we were able to go to the States and visit my brother, because Melody was at camp," Souzan recalls. "It was like – wow!"
In summer, Melody gets to go to the ErinoakKids respite camp for two full weeks, Monday to Friday. In the winter she goes two weekends every four months. More respite would be welcome, but the family is thankful to have this time, knowing that she swims there, has art activity and lots of other things. Melody especially likes the Snoezelen Room – that's a Dutch word referring to a room where kids can interact with special devices that offer various forms of stimulating light, sound and texture – and she always enjoys the one-on-one attention she gets at ErinoakKids. And that's the key to her family's ability to feel free to experience each other while Melody experiences the joys of camp. They're not just parking her for a while; she's having a special experience while her family does other things such as grocery shopping.
Melody's family loves her with a special kind of strength and are glad to know that she's happy at respite camp.