Lucy’s First Year of College with Low Vision: Snippets Worth Remembering

Our first year of parenting a college student with low vision has been a journey for us all. And it is worth remembering.

It’s been a year of extraordinary effort by a girl with serious vision loss who refused to let that be the end of her story. And I picture her coming into the “finish line” this week, glowing with incredibly victorious wings of glory. She has done the impossible.

But this first year with all it’s highs and lows isn’t going to be something we’ll remember from pictures. There won’t be a scrapbook filled with memories or keepsakes. Lucy is not one to take many pictures, and she wouldn’t touch the idea of snapping a selfie with a ten-foot pole.

This post is for Lucy, and for me. And for any parent out there wondering if their child with special needs is going to make it at college.

All I have to tangibly remember her victories are some simple screenshots from my phone. They may make this post look jumbled and overwhelming — but so was her college year, so maybe that’s fitting.

If you’re new here, you can read the full story of Lucy’s journey with Bardet-Biedl Syndrome and low vision.

What It Actually Takes to Be a College Student with Low Vision

My brother’s friend became blind from a rare health problem years ago. He has five children and has adapted in some pretty beautiful ways. But one comment my brother told me has stuck with me and makes my heart ache. He told my brother that he used to be able to do ten significant things in an hour. Now, with his vision loss, it takes ten hours to do one significant thing.

This little story made me catch my breath. I see this in Lucy every single day.

College has been a tremendous uphill battle. Loneliness is one thing, but the academic rigor is even harder. I think of her trying to do the same work a sighted student can do an it blows my mind. Think about what you did in college: scanning highlighted textbook sections, scanning your own notes to remember what you learned, absorbing the visuals a teacher shares. We take so much for granted with our eyesight.

Of course, Lucy does have accommodations. She has the option to take tests in the disability center and she can sign up for classes early. She had an option to have a note-taker which she promptly declined. I think of her lugging her magnifier and special computer all over campus, trying to order food she can’t see, trying to navigate studying for tests and working on final projects when it may seem there is an unsurmountable mountain looming ahead of her. I can understand why she procrastinates and is at a loss as to where to even start assignments she cannot see nor sometimes comprehend.

Through it all, that girl finds time to share light.

Oh how I love her!

Here are some spots of light I want to remember from this year.

How We Stayed Connected from Almost 800 Miles Away

Last year, when Lucy was a senior in high school, Dave and I were struggling to find connection points with Lucy. She was in her bedroom a lot, and didn’t have much social interaction. So we had the idea to make Survivor Night our “thing.” Survivor has been a long-time Pothier family tradition for years in each family growing up. And now all the Pothier cousins who are in Provo gather to watch every Wednesday night. I love that although Lucy cannot see the show on television due to her vision, she knows all the voices by heart and knows the players right from the start.

At first when Lucy moved to Utah for school she was determined that she would get down to Provo every Wednesday to join the Provo crew. But there were a few dead ends to that idea since Provo is two hours away from Logan. In desperation to give her at least some semblance of social outlet, and struggling as to how to stay connected with a college student from afar, Dave and I came up with the idea to watch that show together. Not together in person, of course, but over the phone. We’d start the episode at the same time and enjoy together while on speaker phone. We had some technical difficulties with that and eventually ended up just starting at the same time and texting each other throughout.

I think it works pretty well and has been a pretty special opportunity for us.

When Music Became Her Lifeline at College

Music has become a salve to Lucy’s soul in college. I mean, it always has been. But she has learned to lean into the comfort it brings her even more while away at college. She has determinedly worked piano classes into her schedule both semesters. I got to go to her piano recital last semester and it was incredible to be immersed with all those talented musicians.

This semester she decided she MUST add a guitar class. We went through quite the rigamarole to help her purchase her own guitar . (Thank goodness her proceeds from her cookie business are still hanging in there for now!). She calls after pretty much every music class and you can hear a profound happiness seeping through the phone as she tells me how it went. How do I ever even begin to bless the souls of these teachers who are so patient and interested in helping her succeed?

All that to lead up to one weekend when my parents invited her to go to a concert with them in Logan. She was over the moon excited about it and I LOVED hearing her happy recap after they dropped her off. It was extra fun to get this voicemail from my parents. They were both talking at the same time so the transcription may not make the most sense, but you can tell they were delighted that they got that time with Lu and that she loved it so much:

(The reason my dad’s contact is “Easter Bunny” is a story for another day…)

The College Professor Who Went Above and Beyond

It’s a helpless feeling to watch your daughter struggle to gain the academic tools she needs for success. So when a college professor takes that daughter under their wing, it makes you want to sit down on a curb and cry with gratitude.

That’s what happened one day last week.

I was out on a walk when Lucy called. She had been in a panic over finals, working through technical difficulties on her tests that made it nearly impossible to show what she actually knew. She knows she needs to get a particular GPA to stay in good academic standing. I’ve done all I can do to help from afar (failed partially because I’m far away, but mostly because she does NOT want help from her mother, ha!). She reached out to her professor, and that professor told her she would meet her at the library and give her the final orally — just the two of them.

When Lucy called me after, she had just left and felt like she could walk on water. She had studied her guts out and finally got to show it. I did tear up about that as I walked, the world became that much more beautiful all around me.

All I have is this screenshot to show for that sacred experience.

I am so incredibly grateful for the village of people who take my children under their wings.

A Piano Recital She Almost Didn’t Play

On Monday Lucy had her second college piano recital. I felt so sad she didn’t let me know in advance so I could be there. She said she had planned to practice all week before, but had been so stressed out with everything else that she got side-tracked. On the very afternoon of the recital she still didn’t know how to play the last two lines of her piano piece. She called to see if I could help and sent a picture, but she wouldn’t believe I was telling her the correct notes (she was sure her teacher had told her something different).

Then she tried my sister Saydi (a piano master) who also tried to talk her into the right notes. Then she finally believed a random fellow student she found to ask while at sitting at the grand piano at the student center and got to work.

She called back after that needing more help. I sat at my piano at home while she sat at that piano at the student center in Logan, and she finished learning that song. I picture her there at that grand piano with her large magnifier perched on top, trying to get high enough to see the enlarged notes from her screen and transfer that knowledge to the piano keys.

Impossible.

I wish I could have recorded how beautiful it sounded when she finished.

Another holy moment that I only have a screenshot to remember.

I want to always remember how amazing her brain is at remembering once she learns something.

She sent a text to our family as she went into the recital, and we were all praying for her from afar, wishing we could be there.

Even my sister tried her darnedest to get there and just couldn’t make it happen so last minute. But Lucy sent her a pretty sweet voicemail after she was done.

I think she played that piece with her heart. And I hope she felt our hearts knitting with hers while she performed.

What This Year Taught Me About Letting Go (Again)

First years of college are hard for almost everyone. But for a student navigating the world with dramatically diminishing vision, every ordinary task carries extra weight. And every victory carries extra meaning. Parenting a college student with low vision is not for the weak of heart.

But Lucy is coming to the finish line of this college year.

Not perfectly, not without struggle, but with a kind of quiet courage that I hope she carries with her always.

If you’re parenting a child with low vision or another disability through their college years, know that the village matters enormously. Help your child make their own. The professors who go out of their way, the family traditions that become lifelines, the small moments of music and connection will keep them going.

Hold onto those.

They’re the whole thing.

More of Lucy’s Journey

If you’re new here and want to follow along from the beginning, here are some places to start:

• The beginning of college for Lucy
• Lucy’s diagnosis with BBS
• College prep for Lucy

Also I have created a page with all kinds of posts that tell our special needs journey if you’d like to check it out.