Parent's POV

Can She?

When we talk about Ruby’s Aniridia, there are times the conversation drifts to what Ruby can and can’t do — and, most of those times, the focus seems to drift to can’t.

The same seems to be true when I think about other kids with disabilities — the focus staying on the DISability, not the ability.

The way Ruby’s eyes developed mean she has less central vision than someone without her condition. Both the foveal hypoplasia and central cataracts limit her ability to see detail. This news is enough to make some people feel really sad and sorry for what she can’t do.

“She won’t be able to read a  book.”

“She’ll never see my face.”

“She won’t be able to drive.”

“She can’t play sports.”

“She won’t be able to draw like you do.”

None of these statements are true.

She will learn to read, whether it’s with an assistive device, larger print, or with braille. She may be able to read the first two or three lines on an eye chart. We can’t say with certainty what she will and will not need to read. But we can say with certainty that she’ll be able to read.

She may not see faces like you or I, but she sees faces. She sees them in her own way. She smiles when we smile at her. She laughs at my silly faces. She reaches out for daddy’s beard. It may not be easy from a distance in a crowd, but this isn’t always easy for anyone. Bottom line — she’ll call us, and we’ll be there.

She may or may not learn to drive, depending on what type of assistance is needed. BUT, I know people with perfect 20/20 vision who choose not to get their license because they don’t want to, and don’t need to. Aren’t we a year or two away from driverless vehicles anyway? Technology and science advance every day, so we can’t say she won’t be able to drive based on what the world looks like today.

She can excel at sports. Like any kid, she’ll choose a sport she enjoys most and will get to be pretty darn good at it.  Take Mary Fisher for example — a swimmer with Aniridia who keeps reeling in the golds on the world stage. People naturally gravitate to what they like and what they’re good at.We don’t have to be great at everything. I mean, just because I “can” play golf doesn’t mean I want to.

She can be as creative as she chooses to be. There are so many ways to be expressive — through words, dance, sculpture, painting, fashion design… Visual art isn’t the only form of creativity, and even so, if she chooses to paint, she’ll paint the world as she sees it, and feels it, like any artist does. Check out partially sighted fashion designer Bianca Von Stempel‘s collection. Her designs are guided by her sense of touch. Her first collection was shortlisted for the prestigious Sophie Hallette University Design Challenge, and she’s gaining international attention for it.

‘Unique is our greatest power,’ Von Stempel says. ‘That’s what I want my designs to show, they are about expressing yourself and showing the visual world from a different vantage point.’

 

There are so many stories of people like Bianca kicking a$$ in the world — and they’re kicking way more a$$ than people with perfect vision!

A brilliant astronomer.

An amazing portrait artist.

A prestigious architect.

A Nat Geo TV alum with perfect pitch.

A committed traithlete.

Everyone on this list is BLIND. Little to no vision. (Thanks to the CNIB for helping me find these amazing stories).

We’re limited by our own beliefs of what’s possible. While it’s easy for me to be overwhelmed and sad for the things Ruby can’t do, that’s something I really can’t do. I won’t have Ruby internalize grandiose blanket statements that only serve to limit her abilities when she has so much to offer.

Unique is our greatest power. We’ll learn so much by seeing the world through Ruby’s eyes.

Can she? She can. And she will! She’s already a little force to be reckoned with. As I was writing this post, she called me into her room with a gleeful little squeal. 4.5 months and she has officially rolled over from her back to her tummy. You go girl. You do you.

 

-SG

 

 

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3 thoughts on “Can She?”

  1. Well said Sarah and thank you for making me aware of what people can do and not to focus on what they can’t do. I am definitely guilty of that but will try to change my thinking. Take care Love Bev

    Like

  2. Ruby is an overcomes and an incredible blessing, especially because of the incredible support of her wonderful parents, family and friends! Well written, Sarah! Not limitations…opportunities💜

    Like

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