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seeing a world without sight

by Shawni

I am so very grateful for the blog reader who shared this book recommendation with me:

I don’t know if it would hold the same value to everyone else, but to me, it was priceless. (lots of reviews HERE)

It was such a beautiful memoir of a woman who didn’t let her disabilities get in the way of living her life to the fullest, and it left me with such a heart full of gratitude for the “vision” it gave me into Haben’s world, and in turn, into Lucy’s world.

I am often sent inspirational things about people who conquer unimaginable things despite vision loss. I’m so thankful for those who take the time to send those things, they are inspiring.

It is incredible what the human soul can do.

But sometimes rather than giving me hope for the future those inspirational stories make me feel a sense of loss. I know. Strange. I guess those things just make me wonder if Lucy will find her “thing” that helps her overcome looming obstacles? Will she reach a time where she’s at peace with her syndrome? (She has a lot of sorrow, and has a tough time accepting any help.) Will she ever be proud of her story? And is it ok if she isn’t? Oh don’t get me wrong, she is strong. And she is a spitfire. And she is going places in life. But sometimes it’s hard for her to see that. Every situation is just so different. Everyone has different temperaments, different abilities, different frustration thresholds. And the unknown is kind of scary.

Sometimes it’s hard to think about the future. So sometimes we don’t.

But this book was so powerful to me because it gave me insight into how Lucy must feel as her world darkens around her. Sure, Haben has deafness to add to the vision loss, but for some reason it was so helpful to me to read how a cafeteria feels when you are losing your vision. How it feels to have parents who are so worried about your every move, so worried you won’t be safe because of your disability. It gave me an insight into the incredible technologies that keep advancing to help the blind, and HOPE that maybe some day Lucy will accept how much it can help her. It gave me hope that Lucy will find friends with some of the same disabilities some day, and that they will be strong supports for one another. That she will feel a more powerful sense of belonging. That maybe she will accept the power of Braille and how it can change her life.

It helped me understand so much better where Lucy is coming from. Why she is closed in sometimes, how easy it would be to be skeptical of things in a world where you really can’t see well, but you’re trying oh so hard to make others believe that you can. Why she is so particular about how things are placed, and how things feel.

I was grateful for how Haben went into how sighted, hearing people can interpret all kinds of environmental factors at the same time, and it is so difficult if you have a loss of one of your senses (let alone two!).

It was so interesting (and relate-able) to read that so many blind children don’t do chores because their parents don’t believe they can do them (we are running into this problem around here).

The importance of Braille. Did you know only 10% of blind people know how to read Braille? I hope Lucy will embrace it better some day. There are so many assisted technologies, but Braille can open so many worlds.

Sighted or blind, deaf or hearing, each of us holds just the tiniest part of the world’s wisdom.” So we need to learn from each other. It made me so grateful for the wisdom that Lucy holds, and that it is teaching me every day.

So I told her so (to add to all the other times I’ve told her so). And she listened relatively intently to all the stories I shared from the book.

There is nothing like getting a front row seat into where someone else is coming from. Especially someone like this for me. So Thank you, dear Haben, for writing a book that helped this one mother over in the middle of the desert to have something to hold onto right when she really needed it.

And thank you, dear blog reader, for that great recommendation.

xoxo

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12 comments

Kara M February 18, 2021 - 9:02 am

I’m adding this to my book list. My daughter is 24 and was diagnosed four years ago with a rare disease. It requires her to wear a medic alert bracelet, carry an emergency injection, and be careful about any type of stress. Without diving into it, her body doesn’t produce any of the stress hormones my body does so risk factors are an emotionally hard day at work, a extra physical activity, illness (a UTI sent her into crisis and required an ambulance ride and hospital stay). To see her, you wouldn’t even know something was wrong – she’s a teacher, physically active, and always checking something off her to-do list.

The one thing she can’t check off is being “normal.” She wants it more than anything, as Lucy probably does. It’s tough to watch. What gets me through is knowing that she has the skill to make good decisions and advocate for herself. Thank God.

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Lissa February 18, 2021 - 11:00 am

Very nice post Shawni. I’m always interested in Lucy’s life and how all of that evolves for her and you and Dave. It’s a rare book that can pull you in to feel someone else’s world. Thanks for the suggestion. Do you feel that Lucy’s intense emotional attachment to blending in is related to her own personality or is their any relationship to the syndrome itself (sorry if this a a poorly worded question). Being a teenage girl is so rough already.

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Shawni March 5, 2021 - 8:16 am

Yes it sure is! I think it’s really a little bit of both. But mostly her personality. She came with some pretty intense independence and I think it’s so good in so many ways but also hinders her growth sometimes.

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Amy February 18, 2021 - 1:53 pm

AND there was Light by jacque lusseyran is a must read for parent students of visually impaired.

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Shawni March 5, 2021 - 8:17 am

Yes that one is SO good as well! I wrote my thoughts about that one back here in case you’re interested: https://71toes.com/2019/09/light-in-darkness/

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Heather February 18, 2021 - 3:10 pm

I love stories like this one. But I also believe that people with disabilities do not have to aspire to greatness to have value. They do not need to use their disability to inspire others, if they do not want to.
I love that you recognize that in your daughter. I love hearing about Lucy, and how she navigates her world. I hope we have all made it a world where it is okay that she is mad because she is losing sight. Your example of allowing this in your home is a great place for the rest of us to start.

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Chris February 21, 2021 - 4:20 pm

It has to feel for Lucy extra overwhelming given the high achieving goals and successes of basically every member (including extended) of the family. While this can prove to be motivating, I can imagine it can feel very isolating. And truly, as a parent, I wouldn’t know how to play it. But the love and determination of Shawni is inspiring.

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Shawni March 5, 2021 - 8:20 am

It really is a tricky balance. But she has overcome so much and I’m actually listening to her playing the piano right now, a really tough song, and I’m just overcome with love for her tenacity. I love that she is her own person and has such a special relationship with God to help her in the rough spots.

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Mom February 19, 2021 - 6:38 pm

WOW! This is a next must read for me! Thanks for the heads up! You are doing a fabulous job with Lucy! I love the incredible strides she has made this year toward her future life, even if it happened so gradually that it was hard to see. She is quite incredible!

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Shawni March 6, 2021 - 5:53 pm

So glad she has you as her best cheerleader!

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CHRISTINE ENYART-ELFERS February 22, 2021 - 8:51 pm

Hi Shawni & Lucy. If you enjoyed Haben Girma’s memoir, you might enjoy signing up for this virtual gala celebrating the centennial anniversary for the American Foundation for the Blind. Haben Girma & Kirk Adams, CEO for AFB will be co-hosting an event on March 4th. Here’s the link for ALL the events. Scroll down to see the dates & programs for this 100 year celebration.
https://www.afb.org/about-afb/events-and-awards/2021-centennial
My daughter (Stephanie Enyart), who was diagnosed with Stargardt’s when she was 15 years old, works for AFB as the Chief Public Policy & Research Officer. I’ve shared some of Stephanie’s story with you, but she would be a great resource should you need to chat with someone about how to support Lucy with her declining vision.
Supporting Lucy will be more challenging at various periods of her journey, but, I know she has the support of her family & friends, and resources are available when she needs them. Hope you check out some of the AFB’s Centennial Celebration events. The first one was definitely inspiring!

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Shawni March 6, 2021 - 5:53 pm

Thank you so much for this comment, Christine. I missed the AFB event, but it looks like there’s a recording that I started listening to. Loving it so far. Thank you for letting me know. I searched the site for your daughter and it sounds like she’s doing some pretty fantastic things. I would love to be able to chat with her at some point. Would love any help I can get in that regard! Thank you so much for reaching out.
xoxo

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