Home blindness a mighty miracle found in a team of helpers

a mighty miracle found in a team of helpers

by Shawni

In a discussion with some neighbors the other day we somehow got talking about miracles.

We talked about how sometimes we have to recognize the miracles. We have to be looking for them or they may slip by unnoticed.

And those miracles may come in a different form than we are asking for.

One friend mentioned that the Biblical Moses maybe wasn’t asking God to part the Red Sea.

He was most probably asking for the conflict to just be over already.

Daniel probably prayed to never go in the Lion’s Den in the first place.

Now let’s back up from that discussion and talk about this brave girl who’s vision is dwindling more and more rapidly these days:

She is working so hard.

She is such a conscientious student, but is struggling more and more to see the computer or tiny worksheets her teachers hand out, not realizing there is one girl in their class who is pretending with all her might that “she’s got this!”

A girl who wants desperately to fit in and not need extra help to do the work everyone around her is doing.

This year, after many years of declining help (sometimes kindly, other times in a giant huff…there are so many who want to help her at school, one particular helper who is assigned just to Lucy, but Lucy has refused anything different from all the other students), Lucy got a new case manager.

This woman, realizing how conscientious Lucy is about her grades, called me one day and told me she had an epiphany:

We needed to let Lucy fail.

If she was ever going to accept the accessibility modifications offered, we couldn’t keep carrying her along, reading everything to her, staying up all night trying to help her write in the tiny boxes unknowing teachers printed on her worksheets, trying to help her navigate assignments to highlight particular text with colors she couldn’t see, and trying to finish tests in the same allotted time other students were allowed who could glance over paragraph questions and know what they were asking (it takes Lucy so long for her eyes to focus enough to read one word let alone a whole paragraph).

And you know what? That angel case manager was right.

We have talked until we are blue in the face over and over and over again about the fact that asking for help doesn’t mean you aren’t as smart as everyone else. It just means your eyes aren’t working and you have to learn other ways to do things. But it took a couple of her grades dipping quite low for this spitfire girl of ours to realize it was time to ask for help.

I think this particular assignment was the one that made her decide it was time:

In tears near midnight she decided she couldn’t pretend to be able to read those letters and understand that graph any longer.

She needed help.

She wrote an email to a couple of her teachers letting them know she would accept modifications and enlargements.

And that smart case manager celebrated.

We were getting some traction.

Lucy started coming home with giant stacks of papers with her math all enlarged:

See that stack of paper up there on the left? that is one couple-page study guide.

And the other things are enlargements for one double-sided assignment.

Here are some graphs they made for her:

It is amazing that her teachers will go through this length to help her with the graphing.

We are teary-grateful.

Of course, we are not naive enough to think this is the answer to all the worries. It is still incredibly difficult to navigate those stacks of paper, keeping track of their order, and where to write, and which graph goes with which question maybe two pages later.

It is still difficult for Lucy to express what she needs help with. And she definitely reverts back to dismissing any assistance often. It is a rollercoaster.

This is new territory for all of us.

The Chemistry teacher has never had a vision impaired student, and labs are filled up with unknowns and chemicals that shouldn’t be bumped or mixed wrong. The culinary teacher doesn’t know how to help a vision impaired student measure or work with a hot pan. The World Studies teacher is trying to find an alternate homework program that will not involve so much scrolling and jumping around on a computer where the font is already so big the overall picture is lost. We haven’t figured out how to help her read large passages (the computer can read to her but it’s difficult to navigate even to get that to happen, and the voice is so computerized it’s difficult to understand).

But let’s back up to that discussion about miracles at the beginning of this post.

As those neighbor friends an I were talking, my heart started to swell as I realized we were in the midst of our own miracle.

Sure, this is not the answer I would ask for.

Not the one I pray my guts out for every night, nor the one we are constantly trying to raise awareness and funds for.

The miracle I’m pleading for is for that vision to be restored.

For this girl of mine not to have to deal with such a heavy burden.

I’m not getting that miracle (at least not right now).

But right now we do have a miracle. Multiple miracles, actually:

Lucy lives in a school district with an incredible special needs program.

Every year she gets the best teachers. Ones that make me leave our IEP meetings in tears because they are so good and kind and willing to work with my girl.

This year she got paired with a case manager who was willing to dig deep.

And find a way for Lucy to dig deep.

And although we do not have all the answers (very few, actually), we are making baby steps.

All the teachers are on board to figure this out, no matter how much work it takes.

This was a meeting the case manager put together to get everyone on board as soon as Lucy was willing to ask for help.

Those are all miracles.

And I almost missed them in my wallowing worry wishing for my idea of how this miracle should go.

This struggle is deep and dark, and just last night Lu and I were wallowing in some misery. How can we figure this out?

But one other miracle:

Lucy.

She can do this.

And she amazes me every day.

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23 comments

anonymous September 20, 2022 - 1:00 am

Some thoughts & you may have already had these.
1) Can Lucy get a district diploma? It’s not a GED, but generally has fewer electives to graduate. She would be home earlier & thus have more time for hw & fun.
2) Can the center you went to for the blind walks, let you connect with someone who is local or available via FaceTime who is a couple steps ahead of Lucy in the disease and ask them how to navigate these classes at school? Perhaps even help you explain to the Chemistry teacher some ideas? Or the cooking teacher? I suggest this as I have recently explained to someone who is going to be new to what I’ve gone through already & she was grateful for learning the “lingo” and such.
3) Help her realize what she can still do. Help her celebrate that weekly. I remember a wise bishop had a brother confined to bed before he died young. The wise bishop asked him to address all the envelopes by hand for the bishopric’s holiday card. The bishop showed him he was still capable of giving & making a contribution. The brother felt he still had value . We all need to feel that way no matter our limitations.
Also please make show notes for your sisters’ podcast- thus, all people can enjoy it- even those with hearing loss. Thank you.

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Jenny also September 20, 2022 - 6:04 am

Anonymous, This post is about celebrating the miraculous progress Lucy is making with the support of her parents and teachers. Go Lucy!!

Did Shawni ask for your help or is this a three part response of unsolicited advice? Do you give “options” in real life when people share their miracles you? How is that going?

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Shawni September 20, 2022 - 9:38 pm

Love these thoughts, anonymous! We can use all the help we can get! Lucy is really opinionated about school, she loves her school and wants to be there with all her heart and wants to learn. She just wants to do it like everyone else which makes it tricky. I love the idea of finding someone a few steps ahead of her. We have really tried to hook her up with the other kids at the FBC, (the Foundation for Blind Children), but so far, no luck. We will keep trying!

I love the thought of celebrating all she can do. She can do so much and she is so incredible!

Working on the shownotes for sure! Did you listen to the Rituals new podcast today?

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Katee September 20, 2022 - 5:41 am

What a thoughtful case manager. I am guessing the team has already considered electronic magnification (Visio book or Juno)? Even just to keep at home so she doesn’t look different at school? I have students who use a camera that hooks up to the biggest touch screen Chromebook that is made. I have also set up Crankwheel (a chrome extension) so teachers can share their screens with specific students (so they can then enlarge the projection. (Can you tell I’m a TSVI?)

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Jenny also September 20, 2022 - 6:10 am

That said, advice from a specialized professional seems like it might be helpful.

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Shawni September 20, 2022 - 9:40 pm

I haven’t heard the words Visio book or Juno, I will ask them about it. She does have a magnifier, but not electronic. I do think they have something similar to Crankwheel, but I’ll ask about that as well. I LOVE TSVIs!!! You are an angel to those you work with I am sure. Thank you for the input!

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Kara September 20, 2022 - 6:06 am

I was hesitant to suggest failing for years because you know best as her parents. School is a great place to experience failure when kids have a support system of teachers and family close by. The stakes seem high at the time but not when compared to college, grad school, marriage, a new job, and full on adulting. Happy for all of you for living up to your motto of doing hard things.

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Shawni September 20, 2022 - 9:41 pm

I agree, it is a good time to “fail.” But even though we all know the idea is good, it’s still so tough to let it happen! Thank you for the encouragement.
xoxo

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Lauren September 20, 2022 - 6:16 am

That sweet, smart, STRONG girl.

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Shawni September 20, 2022 - 9:41 pm

xoxo

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Nicolr September 20, 2022 - 7:57 am

This post bright tears to my eyes. Yay for miracles. I’malso thinking about your mama heart. I have a very small inkling of what it’s like to watch your child struggle and miss out, and it is so so hard. There’s really not words to describe that particular heart hurting and worry and I’m sure constant research.

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Shawni September 20, 2022 - 9:44 pm

You’re right about that. The quote is true that says having a child is like agreeing to have pieces of your heart walk around outside of you. Sometimes it really does just rip your heart apart. So grateful for any opportunities to see miracles in the middle of it all.
xoxo

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anonymous September 20, 2022 - 11:28 am

Just last night they were wallowing in some misery. My mama heart was sharing thoughts that perhaps Shawni has already had. Just trying to make high school a bit easier so they do feel successful at it. As a mama, I would hate for her to have to lose a child in high school like I did because fitting in just couldn’t happen. Unfortunately, I learned all the woulda, coulda, and shoulda lessons after it was too late. Don’t worry Jenny also- I won’t be commenting again.

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MPark September 20, 2022 - 6:05 pm

I thought your comment was kind anonymous. I’m not Shawni, but I bet she has learned valuable tips because people are kind enough to comment and share their own experiences here. I am very sorry for your personal sorrows, and I don’t think you need to stop sharing. I grew up being homeschooled and know that one can get into great universities with no GED and no official transcripts. You can even receive great scholarships. There are many pathways to excellent educational opportunities, not just one path set by the school district you reside in. I hope they know that! It sounds like for now, Lucy wants to do the regular path, so I love watching those in her world find ways to make that happen.

This is a special post, and a beautiful chance to think about miracles that can easily be missed. I love hearing about Lucy and her courage, and about all the ways people reach out to help each other. It gives me hope.

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Shauna September 20, 2022 - 9:16 pm

Anonymous….I also thought your reply was kind and respectful. You are helping to shoulder the burden in the only way possible for you with a mother who is doing her very best and I have no doubt appreciates the support. Please continue to comment.

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Kristine September 20, 2022 - 9:04 pm

You didn’t do anything wrong. It just happened the way it did.

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Shawni September 20, 2022 - 9:47 pm

Thank you for sharing, Anonymous. I’m so so very sorry for your loss and sending you much love. We all need to lift any way we can and I hope there are many around you lifting you in your own times of need.
xoxo

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Sarah September 20, 2022 - 8:19 pm

This post was what I needed to read tonight. My 4 year old daughter was diagnosed with an autoimmune disease in January, and I’ve wanted the miracle of it to be that it just goes away. (Although her kind never just goes away…) the road has been so challenging. But your post reminded me to look for the miracles in the journey and the helpers God sends along the way. Praying for Lucy. How difficult losing your eyesight would be at any age, but especially her age.

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Shawni September 20, 2022 - 9:48 pm

Thank you for sharing, Sarah, and I am so sorry your daughter (and you) have to deal with an autoimmune disease. I hope you find many miracles along the way, and also angels who will reach out to help her. And you. Sending you so much love.
xoxo

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ps September 21, 2022 - 6:53 am

I’m reminded of an article I read about blind mathematicians. They described 2 kinds of imagination needed for math – a linear kind that sighted people are good at and also one that is more spacial and tactile that is more difficult for most people to engage, but easier for blind people who have more practice making sense of the world spacially through touch. It really resonated with me as someone (with sight) who is weak in those space math skills looking at Lucy’s homework. I hope she embraces her intelligence and unique skill set.

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Mama Bear September 21, 2022 - 7:51 am

As the mama of a kid with a chronic illness, I can so relate to the pain of knowing the best thing you can do for your child is to step back and watch them struggle and even fail until they decide they’ve had enough. It is HARDER than hard! But oh, that feeling of pride when they come to you and ask for help and KNOW that you’ve got their back…that’s the rainbow in the storm.

And the best thing is when your kid realizes that failing wasn’t actually a bad thing – it was just another step on the path to their own success. One path isn’t better or worse, and that path looks different for everyone, and success looks different for everyone. And this is how I have a teenager who is probably wiser now in many ways than I was at twice her age!

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mom September 21, 2022 - 9:08 pm

How I love seeing all those beautiful people surrounding that table with smiles on their faces so ready to help. But the best part is Lucy’s smile. What a joyful miracle! I’m sure there will be ups and downs on the way through but this is such an important breakthrough for that precious girl! Even though it means more and probably harder work, she’s up to it. Prayers coming for that plucky young woman! Love her so much. And her mom is pretty great too!

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Kristine September 21, 2022 - 9:19 pm

I think especially when siblings are involved and grandparents are still alive the advice tends to be expect everything the same, insist everything the same and a pep talk about not treating differently. Baloney. Everyone is different. It must have been hard to let fail when you and your extended family seem to think everyone must get a’s. Phone contract for example. The fancy schools that just are brand names and usually too much money for their worth. The example of cousins. The pressure internal and external must be enormous.

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