When your sister doesn’t live at home
‘Usually sisters or brothers talk to each other about problems, but because Rachel can't talk, it's hard for me to know what she's feeling.’
Photos by Louise Kinross
Carolyn But, 13 (above right), shares a lot in common with her sister Rachel, 11.

The two girls have shiny, black hair, “think the same things and like the same things like music,” Carolyn says.

But Rachel has never lived at home.

Rachel was born with a life-threatening condition that weakens her muscles. She lives at Bloorview Kids Rehab where she uses a ventilator to breathe and a wheelchair to move.

“I used to cry when we had to leave her because I’d like to have her at home,” Carolyn says.

Carolyn loves to push Rachel around the hospital, show her the exotic fish tank and “talk to her about stuff — mostly filling her in about my mom and dad,” she says. “Rachel likes to hear me sing and will start smiling — especially if I sing the Hokey Pokey. We like to take her out to play and one time they had kids from the University of Toronto come to sing Christmas carols and Rachel was laughing. She smiles a lot when she hears my parents’ or my voice. She has two little dimples that we like to see and sometimes when she’s very, very happy she makes a laughing noise.”

If Carolyn had a magic wand, she would give Rachel a richer way to communicate, she says. Right now Rachel can answer ‘yes’ by looking up and ‘no’ by looking down. “Usually sisters or brothers talk to each other about problems they have, but because Rachel can’t talk, it’s hard for me to know what she’s feeling, and when I tell her something she can’t respond back.”

Carolyn says she worries about the future. “If my mom and dad get old and I have to take care of her, I can do that. But what happens if later on she dies and I get really sad and heartbroken?”


Carolyn’s tips for children whose brothers or sisters are in hospital

1. If you can’t communicate with your sibling, you can write your problems in a journal, which will make you feel better. Or you can write something for your sibling and read it to her. You can also tell your parents what you have in your mind.

2. Sometimes even if your sibling can’t talk, you can still tell what they want to do or what they need, because you understand them so well.

3. If you can’t visit your sibling in hospital, have a nurse put the phone to your sibling’s ear so they can hear you talk.

4. One of your parents may be better at explaining what happened to your sibling, using words you understand. I like hearing stories about what happened to my sister so I can understand her better.

5. It helps if you become friends with someone who also has a sister or brother in the hospital, maybe on the same unit. It’s easier to talk to them about what happened and what you can do about it, because they understand.

Bloorview Kids Rehab | Bloorview’s Resource Centre