The story we don't hear: What it's like to be the sibling of someone with a disability.


This story has been published with permission from the author’s daughters.

My youngest daughter, Katy, is an attention hog. She loves the spotlight and the limelight, and any other light she can get to shine on her. She loves to dance and cheer, basking in the glow of the eyes on her. She loves people and knows how to wrap them around her little finger. She’s 14 and stands at about 4’7″, which seems to be about as tall as she’s going to get. She weighs in at about 75 pounds. That small size means people see her as cute and sweet, and when you throw in her zeal for everything, it adds to the attention that is naturally drawn to her. Oh, and she has Down syndrome.

Vanessa Cranfield on parenting a child with a disability. Post continues after video. 

My oldest daughter, Libby, is nearly the opposite in personality. She doesn’t mind being in the spotlight, but she doesn’t seek it out. She’s not shy, but she’d rather be in supporting cast as opposed to the star. She’s an extremely hard worker (in swimming or school or anything else), and she’s funny and smart. She can be a bit snarky, is slow to anger and quick to shake it off (and laugh at herself). She’s pretty much even-tempered and measured. She’s just 15 months older than her sister and has been watching and worrying and carrying her in one form or another for as long as she can remember. She’s the sister of a child with Down syndrome.

Mostly, my daughters have a typical relationship. Basic sibling dynamics. They have very different personalities, and sometimes those personalities clash. Although Libby doesn’t seek out the spotlight, she does get a little angry that her sister gets all the attention. Katy, on the other hand, looks at Libby and sees a girl only a year older than her but one who gets to do everything first.

In some ways I worry more about Libby than about Katy. She pushes herself very hard, feeling like she needs to overachieve, getting mad at herself when she doesn’t live up to her own standards. She has very little time for people who are lazy or make foolish choices. She expects a lot from herself and doesn’t cut a lot of slack for those around her. Talking to other parents and reading about their experiences, I’ve come to understand that Libby’s personality is not unusual among siblings of children with disabilities.

Myself, I can only talk about Libby. I worry about how hard she pushes herself, and about what she expects of herself. The disappointments in life are good for her, as we’ve learned (I think they’re good for every child, but even more so for an overachiever — it kind of brings them back to centre). Last year was tough for Libby. She injured her ankle early in the year and never had a chance to fully recover. Other factors added in, and she had a disappointing swim season. She was frustrated and upset that she couldn’t do anything to make it better, and her grades suffered a bit in the process.

This year we’ve dealt with anxiety (which I expected to arrive at some point), showing up as stomach issues. It comes on at the expected times (big tests, big swim meets), and she’s learning how to deal with it and how to combat it. A mantra of, “I’m going to take it as it is. I can only do what I can do” spoken repeatedly by her (and me, to her) seems to help.

Speaking of “take it as it is,” I worry about what happens when her father and I die (it’s going to happen at some point) and when Libby takes on the role of Katy’s guardian. Hopefully that won’t be for many, many years, but I still worry. Of course, this is a role for which she’s been preparing her whole life. She’s been watching out for Katy, fighting for her, carrying her when she needs to be carried, since they were just toddlers. You know, the way that older sisters do.

Libby was in first grade, I think, when it hit her that Katy wasn’t going to have the same life as her and her friends. That as hard as Katy studies and no matter how much we help her, Katy’s life experience isn’t going to be the same as Libby’s. While Libby dreamt of being a lawyer or a doctor, she realised that Katy can never achieve those things (although Katy has no desire to do either of these things).

Last autumn at our local Buddy Walk, we stopped to chat with one of my friends, a mother of a son with Down syndrome. She did an amazing job raising money for the walk for her son’s team, and next to her tent was a tent for another Buddy Walk team. Libby asked me about it. Our conversation went something like this:

“That’s her daughter’s project. She set up that team and raised money for the Buddy Walk in addition to the team for her brother.” I explained.

“How old is she?”

“Twelve or 13? She’s younger than her brother.”

“Oh wow.” Then, later, “Mum, should I be doing something like that?”

I told her to do what she’s comfortable with. “As long as you’re on Katy’s side, pushing her to be better and pushing the world to see her for who she is, pushing those around her to do more, you’re advocating. Be her sister and her champion in your way.”

I wanted Libby to understand there is not another thing she needs to push herself to be or do. I want her to have the best life she can have, but not to feel like she has to live life for her sister as well. I want her to be all that she can be, but also to find time for friends and fun. I want her to know that being herself is enough for us, and for Katy. I want her to know that by being herself, finding what makes her happy, doing what she’s comfortable doing, she’s being the best sister Katy could ever have.

This story was originally published on The Mighty and has been republished with full permission.