Warning: this is a little bit blubbery.

Oh man alive, this last week of school business is not for the weak of heart I tell you! The hubbub of May is always tricky, are you with me fellow mothers? For me this year is such a strange mix of nostalgia and worry. Things are heightened up a notch when you have an extremely conscientious kid trying to get all A’s alongside some severe vision impairment. Some dark sorrow is settling in as we all start to contemplate senior year for Lucy. How do we manage the far-flung aspirations of this wonder girl of ours? We try to hold on to so many hopes and dreams. But they get so slippery.

We don’t know how to do this, but we sure are trying!

I am ever grateful for her fantastic vision teacher who has helped her more than words can say. But even then, I cannot even believe how this girl maneuvers her computer. She enlarges things so huge, then has to keep moving the whole screen over to where the questions are, then moves the whole thing back, losing her place in the process. And how do you even remember what you were swiping across the whole computer to find once you finally get there?

With senior year coming next year we are a ball of emotions over here. Our hearts are forever and always wrapping their way around this girl we adore and how to better cope with the sorrows relating to BBS we are both wading in, deep and sticky.

And I get a little teary-eyed thinking of how far she’s come.

How that tenacious go-getter of mine has made her way through so many hard things. I mean, the ACT??

And then I get teary-eyed (actually, sometimes it’s a full-on bawl) every time I think of her vision teacher who read her every single one of those ACT questions. It took two full days. And I practiced enough with the practice tests to know that is no cakewalk.

Keep in mind the ACT is not required of many colleges. She could have easily ducked out of that one. But remember, this is one tenacious girl. She wants to do it all. And she does!

Here’s a question:

Who could have known ANATOMY could be the favorite class of a girl who can’t see well? I have no idea how she’s going to brave this final coming up tomorrow where she has to label all the muscles and bones. Some of them are tiny. And the drawings are tiny and black and white with no contrast. Oh her vision teacher will help, and they are doing everything they can, but it’s just all-around tricky business. We sure have been working on it I tell you!

But oh how she loves the challenge. She calls me pretty much every day en route from anatomy to seminary, and she is always chock-full of all kinds of tidbits about the human body. Should she go into the health industry? I sure think so! But she’s got it in her mind she wants to work at a restaurant…

This is where it’s getting tricky though: even with her vision teacher helping on so many levels (love her FOREVER!), how does this transfer to college? She needs a lot of help.

There was one night last week where she had to make a brochure (once again, for anatomy). She waited until the last night to do it. I think this was because it was overwhelming to her. How was she going to do it? She couldn’t really see the instructions, it was a tricky concept. So she waited. And all the stress broke out the night my brother was here trying to set up for his school party and our internet went out. We couldn’t print any pictures to finish it off. So there we were, up at 1:00am trying to trace and color all these different parts of a brochure Lucy didn’t really get….

…while I simultaneously made muffins for her Spanish class that she apparently HAD to have the next day…

And not only were we emotional from being tired (there were a lot of late nights leading up to this and a lot of stressful homework), we were emotional because I think deep down we both wondered how this transfers after next year. Oh how she wants to go. And staying in the desert? Not an option in this girl’s mind. So if she’s gone, who will be staying up with her to finish assignments? How will she maneuver? What can this look like in college? (College is the ultimate goal for this girl BTW, and she has her sights set on Boston University…not sure how to maneuver that at all.)

I don’t know, and I cannot go into the depths of all that right now. Let’s instead dive into the miracle that came to us the other night.

A Miracle in the form of our neighbor

It was a night of hopelessness. She could not for the life of her figure out her math. We had hired a tutor who tried to help, but she was still helplessly lost. We had a friend come over to try to help the week before, but again: Lost. No tutoring hours available from the teacher since she’s trying to balance re-taking other tests. And this conscientious student of mine was absolutely beside herself with worry. In her mind she was surely going to fail that test. She was texting everyone she knew to see if they could help.

Just when we both hit the climax of helplessness, our neighbor knocked on the door, fresh from Japan of all places, and presumably quite jet-lagged.

He started helping Lucy with her statistics and I almost burst into tears (can you tell I’m a little bit of an emotional basketcase lately?) I just worked on my kitchen project, thanking God on repeat for this tender mercy in the form of my neighbor.

Thank you.

Thank you.

Thank you.

He was so calming and kind, had the best explanations, and the tears kept welling up in my eyes.

It was a pure miracle that this girl could go from wailing an hour before to this:

When they were done I sat up on the counter next to them and looked Lucy in the eye and told her to remember this every time she thinks God doesn’t care about her. I asked Mike how he knew to come, thinking it was some sort of divine intervention. To which he responded that Lucy had texted him.

Ha!

I didn’t even know she had his number. But this girl is resourceful I tell you!

Sometimes you sure need to do a little legwork to get the miracles, right?

I loved this night because not only do I believe God is aware of my Lu, it was a testament to me that sometimes we need to reach out more. Not just wait for things to happen. And Lucy is just so good at that.

And I will forever be grateful for our neighbor and that special moment.

Now, the test didn’t actually go that well the next day. But my daughter’s heart was still so lifted that in the end, that was the most important thing.

Here’s to finding many more miracles in the journey and the people who will surround Lucy in the next couple years as we brace ourselves for what happens in “the beyond,” past high school.

I pray that we will be able to recognize them. And be thankful for even the little mercies that come along, the ones asked and begged for or just found in our path.

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28 Comments

  1. Lucy is going places, one way or another!
    It is amazing how she is able to ask for help and be persistent. I really am in awe of her. She is amazing!!
    Love from Germany

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  2. A miracle for sure! What a kind and sweet neighbor to come even when jet lagged. Shawni, enjoy the moment. Don’t rush her senior year away. I know as Mother’s we let our worries consume us some days. Heavenly Father hears your prayers and will be there to answer them in due time. He is aware of you and your sweet, spunky, and inspiring Lucy!

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    1. Oh I’m sure trying to, but I appreciate all the reminders. There’s going to be a lot to do to get her ready to go, but you’re right, God is in charge!
      xoxo

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  3. you must be doing something right to have a girl that strong that advocates for herself to get help. go go go lucy!

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  4. I’m certain you don’t need this kind of encouragement, but I wanted to share about my friend who has such severe dyslexia that reading is impossible — while she has eyes to see, they simply do not see. She wanted to be a teacher, the best kind of teacher she could be, but she couldn’t even read the picture books to her kindergarten students. She wanted to go get an advanced degree at Harvard so she could learn the things she so deeply desired to learn.

    She did both. She became a teacher, then an elementary school principal, then a tenured college professor. She is now writing a book on her family history that she has studied. It took someone by her side to read and help her, until she could make adjustments, but she did it.

    She’s not famous. Few know of her struggles. But she did what she came to do.

    I’m certain Lucy will find her way.

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    1. Oh thank you so much for the encouragement, Jane! I so appreciate it. And your friend sounds amazing. It’s so incredible when people overcome obstacles in life!
      xoxo

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  5. I just love your writing, I love how brave your children are, and I am so so so happy this blog exists! It is SUCH an encouragement to me. Praying for your sweet girl as she figures out her next step. SHE’S GOT THIS! And so does God 🙂

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    1. Thank you sweet Molly. Thanks for your encouragement and for sending love and prayers. Sending so much love right on back!
      xoxo

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  6. Shawni! You are incredible and so is Lucy. So many blessings and tender mercies. I can’t even fathom all that she goes through and his as her mom trying to figure things out. But I do know God knows. 💕

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    1. I believe God knows as well. We need to learn to listen better than ever as we go forward. Thanks for the love.
      xoxo

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  8. Some parts of your immediate family and extended family enviable. But when you have a child with a challenge it’s not enviable. I’m sure your parents are all rainbows and unicorns about the blind artist. Universities have had accommodation for hearing and sight impaired students from the 90’s. Although I think braille was mastered from the beginning for those students, not one that could see a long time and then could not. Your late friend Sarah said it well that college was a fit. The world is way more accomodating than the 90’s. It just seems among the Eyre’s it a contest. One does BYU Jerusalem so all must do. One serves a mission all must do. Pressured to fulfill challenges promised at age 8 ten years later. I am glad some of the older cousins didn’t serve missions so the pressure for that is over for most of them. My kids on spectrum. He only recently wants to go to college. One year left of high school. It’s cause there is so much pressure at school. They have to take PSAT and SAT, three years in a row. There is no opt out. It’s not us, we both went. If we had 4 elder siblings for him we would be not be overly gushy or pushy or overthink what happens to them after high school. College, trade, military all fine. We decided that before kids. Because he is an only he has never heard of Boston U. He knows the community colleges around us are schools for grown ups. We would also not be making him learn another language when he is elementary school for 6 months cause everyone in the family must live abroad for the challenge and perhaps content for a book or speech? He was not raised like us or how we thought he would be raise kids. We can’t copy or perfect our family based on past history. You should forget it all and just take things as they come for the next few years. Four birds left the nest. You have nothing to prove. Each kid is different and doesn’t have to do the same things all the time or in the same order. It’s going to be how it is going to be. Some kids teach us more than we teach them. And for some reason it’s supposed to be that way.

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  9. This is 100% NOT trying to push unsolicited advice on you, but I am just curious … does Lucy not want to use an external monitor with her laptop? She could get a wide-format monitor, enlarge everything like crazy and not have to scroll side-to-side.

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    1. I really haven’t even thought of this before! We definitely need to try it. I am wondering if it would be difficult to train her eyes from one enlarged screen to the next but we will definitely give it a try. Thank you for the idea, we’ll take any ideas we can get.
      xoxo

      Reply

  10. What a powerhouse of a person – this is Lucy’s world and we are all just watching her soar from the sidelines. Incredible resourcefulness and stick-with-it-ness. I have no doubt she is destined for far greater things than we can imagine. Excited to say things like “I read her mom’s blog when she was a little kid!” and everyone will be like, “you know the world-renowned Dr. Lucy, PhD??” and I will say “kinda” just to earn myself some cool points. Keep going, Lucy!

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  11. Universities usually have disability resource centers. They can provide extended test taking time, modifications, and notes to professors (for approved audio/video recording of lectures and such or access to powerpoints, note taking, test time/taking modifications). Modifications usually can’t be made for untimed activities though (e.g. writing a paper). The resource center will need to work closely with her doctor to indicate specific adaptations (within reason of the course and professors contract) to allow. When a professor receives a letter from the disability resource center, they must comply with it. Source: I’ve worked with many students who have had letters from the disability resource center at 2 public universities. I worked with a student who had severe disabilities (vision, processing time, and some hidden physical ones), she and her doctors worked closely with the disability resource center on campus for reasonable modifications. Though she wanted some modifications, they were not able to offer her some because they significantly altered the form and content of the course. So that is something to consider too. As Lucy is choosing schools to apply to, check in with the Disability Resource Center, explain the situation and modifications needed, and see what they can offer. Smaller or private universities may be able to offer her more options than larger public institutions (based on my experience).

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  12. As Lucy delves further into school, she may wish to consider having multiple large computer screens for her work. I’m not sure if this is viable for her, but it might help to not have to toggle back and forth quite so much. Good luck! Her grit and determination will take her far.

    Reply

    1. This good idea was brought up above as well…we will look into this. I think it could be hard for her to move her eyes from one screen to another but maybe it will make all the difference. Thanks for sharing. xoxo

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  14. I think I’ve mentioned in the comments before, but the disability resource center at UC Berkeley is incredible and there is a prevalent community of people with disabilities here — a close friend in college was legally blind among a few other challenges and she received incredible accommodations and support, and also connected with a great community. Plus it’s not too far from where Elle and Carson seem to be heading for a bit? Just a thought, and if you ever come to town to check it out, I’d be happy to give an informal tour of the campus!

    Reply

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