katinkaDoes that mean I get a cane now?

And a dog?

That would be sooooo cool!

She was excited, my precious one. She skipped and danced, as we left the hospital. I had just explained to her, in careful wording, that she was now officially ‘disabled’. At the last tests, her eyesight was down to ten percent, which was substantially less than a bystander would judge. Most people don’t even notice she is 90 % blind.

She compensates a lot, the therapist confirmed. She constantly moves her head around to get a full view with the remaining ten percent. Her eye-brain-connection is still flexible and easily adjusts. She even unconsciously practices echo localisation. The scientist in me finds thàt extremely cool.

The overwhelmed mother, on the other hand, was nearly in tears. I had known what was coming. I had heard the forecast. I had seen the clouds. But still, the thunder unsettled me.

Disabled. The phrasing seems so inappropriate for her. She is so able!

She is in first grade now and struggles to learn how to read. Focusing on the letters is extremely tiring for her. She keeps losing track of the word she is reading, as it disappears in the 90 % cloudy view. She literally has to press her nose next to the word she is deciphering. Writing is even harder, with minimal sight to guide her hand.

But still, she keeps trying. For the last month, she has worked twice as hard as her classmates. She has begged for extra homework and practised until her neck was hurting too much from bending down. For now, she just craved to learn how to read.

So that’s what she did. Last Thursday, she passed her first reading test. Yes, she was far slower than her peers. But she passed. I’ve never been prouder.

As of today, with her official label of disabled, she is entitled to extra support, both at home and in school. We’ll get her a special, tilted desk to spare her neck. Binoculars to keep track of the writing on the board and other magnification aids. Learning will become easier for her from now on.

2015 WMB Quote K10K Disabled

And no, she won’t get a cane and a dog just yet.

She wasn’t even disappointed and kept skipping, not noticing all the people who had to jump aside to let her pass.

I don’t need them anyway!

Instead, she asked for eye make-up.

You know, because the doctor said I have such lovely eyes.

She chose yellow, which turned golden on her skin.

Sunny clouded eyes.

How do you talk with your child about disabilities? Do you recognize the lightness of heart a child can deal with it?

This is an original post to World Moms Blog by K10K @ The Penguin and The Panther.

The picture in this post is credited to the author.

Katinka

If you ask her about her daytime job, Katinka will tell you all about the challenge of studying the fate of radioactive substances in the deep subsurface. Her most demanding and rewarding job however is raising four kids together with five other parents, each with their own quirks, wishes and (dis)abilities. As parenting and especially co-parenting involves a lot of letting go, she finds herself singing the theme song to Frozen over and over again, even when the kids are not even there...

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