Home blindness one giant step into the great unknown

one giant step into the great unknown

by Shawni

You know that saying “when one door closes, another one opens”?

That happened for us last week.

But let me leave you hanging for a minute on that newly open door to announce that February is Retinitis Pigmentosa Awareness month.

What in Heaven’s name is retinitis pigmentosa you might ask?

It is a rare genetic disorder that causes the breakdown and loss of cells in the retina (the light sensitive tissue that lines the back of the eye).

It causes vision impairment and blindness.

And Lucy has it. as part of her Bardet-Biedl syndrome (BBS).

When I looked up the “awareness” part yesterday this picture popped up and made me tear up instantly:

Because that picture on the right is a prediction of what Lucy would see in that beautiful forest.

My girl who adores nature more than anyone else I know and tries with all her might to describe it together and soak it in any way she can.

Perhaps she feels it rather than sees it?

I love that this “door opened” for her during retinitis pigmentosa awareness month, so let’s get back to that:

We had been prepped to all head to Austin together, the four of us, to watch Claire’s volleyball tournament (and to breathe that same Austin air where Grace is serving as a missionary:), but our plans were thwarted when our flight was canceled due to unprecedented ice storms in the weather forecast.

I talked about that back HERE, and was grateful Dave and Claire, along with the team still made it, (especially since they ended up fighting hard and GOT THEIR NATIONALS BID for the Open division…pretty huge deal…which is a post for another day).

Of course I would have so loved to be there to cheer Claire on, but something felt SO right about staying home, just me and Lu.

It happened to be a weekend where my social Lucy kind of hit rock bottom emotionally. Her world is changing so much. I think of her in that sea of students in high school trying to maneuver her way to get to class let alone meet new people she can’t even see. Her friends, the most adorable girls in the world, are moving on.

Branching out.

Not leaving her behind intentionally, but they can bike and run and jump and meet new social circles. They can read face expressions and see social cues and take mental notes on them all.

And Lucy can’t.

It is heartbreaking to watch this girl who is so incredibly social wilt.

For months and months I have tried to talk up some classes I found at the Foundation for Blind Children I thought could really help her. The possibility of new friends on the horizon who she could learn from and relate to in a new way. The opportunity to learn more ways to be independent. To learn techniques that can help her maneuver her world better.

But Lucy shut me down every time. New things for Lucy are like fingernails on a chalkboard. She does NOT like them. Especially if they make her more different. And even more especially if they have anything to do with vision loss.

And I get it!

If I couldn’t see very well I wouldn’t want anything to change either. I would crave stability and defined parameters. If I were a teenager again I would most definitely not want to make myself even more different than I felt already. And walking into a new place where I didn’t know anyone? Forget about it.

Which makes me even more proud of what happened after Lucy and I lay snuggling in her bed, her bawling on my shoulder last weekend:

She agreed to try a “Super Saturday” class at the Foundation for Blind Children.

At first I held my breath. Oh, I wanted her to hold onto that resolve with all her might. Maybe if I held my breath I could almost hold the resolve for her?

But she got in the car with me that morning and even told me how excited she was as we drove. She opened up and told me all kinds of things about Braille en route, she knows SO MUCH and is usually unwilling to talk about any of it. (Braille is INCREDIBLE by the way, and she is getting so good at it according to her teacher.)

I teared up as she walked into that room filled up with other girls with white canes, chin up, so brave.

I teared up again when the lady I’ve been emailing with told me about the other programs they have including a summer high school program and I wondered if I might freak her out a little if I gave her the gigantic hug I wanted to (I opted out of that, probably a good thing:). I was so filled up with hope for my girl.

It wasn’t all smooth as silk. Lu called me quite unsure half way through.

But in the end she made it, and came out triumphant.

And she was even open to going again in the future as she told me all about it on the way home.

I am so overcome with gratitude for places like the Foundation for Blind Children and the people who work there.

So grateful that the closing of the door to Austin somehow helped to this open one.

And that my feisty girl is holding that newly opened door full of opportunity freshly ajar.

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7 comments

PS February 15, 2022 - 9:34 am

As a long time reader, I am so happy to read this. Growing up is *hard* – so many decisions and it always seems the peer group makes different ones. Your daughter is doing it beautifully!

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PS February 15, 2022 - 10:08 am

Also bravo for supporting Lucy taking the lead – takes real growth on the parents’ as well. Your spiritual nails must be bitten through!

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Shawni February 16, 2022 - 1:29 pm

She really is doing it beautifully. She is strong. And she teaches me so much!

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jenny also February 15, 2022 - 4:00 pm

Yay Lucy!!! You must be so incredibly proud of your brave, strong girl! chokes me up just to think about it. Maybe you won’t be cheering her on the volleyball sidelines like you did your other children. And aren’t you just as proud, maybe even a little bit prouder, to see your youngest girl wonder walk into this group!

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Shawni February 16, 2022 - 1:30 pm

Oh my heart just wanted to burst as she walked in there. So so proud of her and the tough things she does every day.
xoxo

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Kristine February 16, 2022 - 9:46 pm

This is wonderful.

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Laura February 17, 2022 - 11:11 pm

This made my heart grow 3 sizes! For Lucy, and for her family, whose prayers were answered.

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