The school nurse from the junior high asked me to bring Lucy in one morning before school started for her vision check.
It was strange to be in that echoy school, all the front office so sweet and happy to see Lucy again. I figured they had called us in because Lucy has an IEP and they needed to check everything, but apparently this nurse knew nothing about Lucy’s syndrome because she was pretty stressed out that Lucy couldn’t see a single letter on the eye chart. I explained the situation and that yes, she is losing her vision, but the nurse was still pretty upset explaining that during her check not that long ago it had been reported that she could see many of those letters. I was calm on the outside and let her know it was all ok, we’ve watched her vision decrease pretty dramatically lately. But when we left I couldn’t help but tear up, glad for my mask to hide my emotions.
Vision is a hard thing to try to cling to.
There was one night, though, when everyone was home, where Dave gathered us all at dinner and explained to the kids what is going on in our BBS world. Dave and I had been having some BBS conference calls most Sunday nights with friends in the BBS community trying to get some serious progress in the works. One guy in this group is really linked in with the medical world and with some new research he feels there is still hope for our kids.
Is it really valid hope or is it just a sliver glistening on the horizon that we keep chasing? A glimmer that we as parents want so much to make more tangible?
I don’t know, but it was good to let the whole family know what is happening in the details. Later that night Lucy and I went out on a late night scooter ride with Bo, our shadows stretching off into the heat from the streetlights. Lucy had obviously been pondering what Dave had said. She asked if she were to get her vision back some day whether I thought she would lose her “super” senses she feels like she has (she thinks she can smell and hear better than the average person because of her lack of vision…whether or not that is reality, I’m not sure, but if she believes it I think it becomes real).
I asked if she would trade those super senses of hers in for better vision.
After thinking about it for a little while she said maybe she wouldn’t. Maybe those other senses might be enough.
Something in that conversation placed so much calm in my heart as we rode along in the warm summer night shadows, mother and daughter together with peace surrounding us.
We went on to discuss how important Braille is going to be for her going forward (she is so against/embarrassed by Braille…trying to get her pumped up).
So far this year it seems to be working. She’s much more willing to work on those Braille skills and she told her teacher she wants to complete sixteen levels rather than moseying along at a snail’s rate like she’s been for the last few years.
I don’t know how long that will last, but generally I think this girl is realizing losing your vision isn’t the worst thing in the world.
And her parents are realizing it too. Just a little, tiny bit, but it’s all alright.
Shame Lucy is such an amazing girl.It must be really hard for her and you to go through this.Our family always prays for her:)
I think some of the struggles that Lucy has is what is helping her to be an amazing girl. I think her very strong spirit & relationship with Christ are what is helping her to get through this challenge. A challenge that I doubt many of us would handle very well.
I agree, and I think she agrees too…She is turning ashes to beauty as she valiantly deals with these struggles. She’s such a good example to her mama.
This post made me cry. That sweet girl is growing and stretching in so many amazing ways! BTW thank you so much for the post on Lucy’s favorite books – the are all in my list to read!
Thanks Kim, and I think you’ll love the books!
Lucy you are simply amazing. I’m sure she feels her Heavenly Father’s love with her each step of the way. That makes the impossible possible.
I really think she does. That girl has a giant spirit, and she works hard to connect it to Heaven.
Hello Shawni – I’m a long-time reader and a mother with teenagers of my own. I’ve experienced first hand how hard it is to parent and navigate the issues of the modern teen and I enjoy your insights! I was wondering if you have access to a school for the blind in your part of the country? Here in Massachusetts, we have The Carroll School For The Blind and we know a college student who went there off and on for years with great success. When I read today’s post, I wondered if Lucy might thrive in a place where everyone has sight issues and where everyone is learning Braille? Please excuse me if you’ve answered this question in the past and I just don’t remember reading the answer!
This is a great question. My friend with a son who has BBS just a year or so older than Lucy is in a school for the blind and is thriving there. We do have an excellent school for the blind not too far away from us and I think eventually Lucy will be ready for that but for now she loves her school and her friends, even if the gap is widening quite dramatically with what she can participate in. Certainly something to think about in the future though.
Lucy is amazing and so are you. Thank you for always encouraging me as another mom. You help much more than you could ever know!
Oh thank you Molly, I so appreciate that sweet comment.
What a beautiful experience you two have had! I used to visit teach a sister whose husband was blind. He could see as a child and remembered it and oh he had the stories to tell – like bike riding after he could no longer see with his friends shouting directions to him to avoid obstacles. As an adult he worked for the county bus system. Back in those pre-internet days people would call a helpline to find out what busses they needed to take to get somewhere. He had the entire line memorized and would tell people the best routes to take. I used to drive him places quite a bit and he always knew what route I was taking because he had the maps memorized. He was a bang up primary teacher too. She will continue to be amazing in her own way I am sure because of her own special gifts. Thanks for sharing pieces of your wonderful daughter.
Wow that is amazing. And inspiring. I think it’s pretty beautiful that each person suffering from such a myriad of different obstacles (including each one of us, because we all have them, right?) can find things that we can excel at if we will look and use and cultivate the unique talents we do have.
Lucy really is an amazing young woman. I know someone who lost both eyes to cancer. I cannot believe the things that woman does! She seems to have those extra senses too, like Lucy. I do think there’s truth to it. I have no doubt Lucy will thrive no matter what her eye sight situation is. I don’t know if you’ve ever seen the (Disney?) movie, “Wild Hearts Can’t Be Broken.” It’s a true story about a girl (during the time of the Great Depression) who was a horse diver and due to an accident went blind….it shows a bit of the struggle she had accepting it and some of the hard things, but how she kept going and didn’t give up. It’s very inspirational. One of my favorites. It’s hard to know if something so close to home would be a positive, inspirational thing, or maybe just cause extra unwanted feelings and emotions. When you said you were glad you had the mask to hide your emotions, I felt that–with tears in my own eyes. I’m also happy to hear Lucy is planning to learn more Braille. That will really be a blessing to her.
I LOVED this movie!
I just talked to Lucy about that movie last night (per your recommendation) and she is excited to check it out. Thank you for the suggestion!
Wow! I would love to hear more about what is happening in the BBS world. Sounds like some really great work is going on. Sending hugs!
Oh it is all a work in progress I think! I will be sure to post when we have anything concrete to report, it just feels good to have people really in this together, you know?
I have a disability that is constantly being tauted as the cure being “5 years away”. My dad had it and when he was diagnosed at 7 years old, he was told the cure is “5 years away”. When the first treatment for this disease came out in the 1920s, they said a cure was “5 years away.”
Some people with my disability spend all their time following the research, hoping and dreaming and wishing. One day, they’ll be cured!
I have found, though, that these brothers in disability of mine, they aren’t happy. They’re constantly depressed. They hate their life. They put their life on hold, and they’ll resume it when they get cured. If only they didn’t have this disability, then they’d be able to be happy. Additionally, they put their treatment on the back burner. Why try so hard when a cure is 5 years away?
My dad was this way. He made it to his 60s. When he was diagnosed, he wasn’t expected to make it to college. He was so depressed. So many decades, and he still had hope. Hope in the future, but depression in the present.
When I got the same disability (it’s genetic), we had to not talk about it together. I didn’t want to be like him and keep waiting for the cure. He was so mad at me. “What’s so wrong with being hopeful?!” We argued a lot.
No, I don’t have any hope for a cure for me. Generations of my folk have been lied to. I won’t accept this false hope.
Instead, I focus on now. Living my best and happiest life with this disease. Despite being called cynical for this, this though processes exactly why I am happy and my dad never was.
There’s a reason hope was in the bottom of Pandora’s box.
And, I may be like your daughter. If a cure came, I don’t think I’d accept it. I certainly wouldn’t be the first in line. I have concerns over side effects, but I also have concerns over me. My disease isn’t something I caught, it’s inside me. It’s in my dna. I grew up in a house with my dad having this disease and then I got it. It’s so intertwined with my identity, that I’m not sure who I would be without it. I have let myself be happy with who I am right now, and not daydreamed about who I might be “in 5 years” when the cure arrives.
It sounds like your daughter might “have no hope.” If that’s true, then I am so happy for her. That means she is happy and loved just now, just as she is, and isn’t constantly craving and starving for a life she doesn’t have.
Really interesting points, Whitney, and I think Lucy can definitely relate. She is one spunky girl and I think this syndrome has helped mold her into something so beautiful. Who knows what the future holds, but I’m so grateful that she is starting to have seeds of “I’m ok” even if we never reach that vision cure that is always eluding us on the horizon. I’m so glad you are living your life to the fullest despite having to deal with a disability.
I don’t know whether you know about it, but just in case you don’t: there are LEGO Braille bricks – maybe her love for LEGO might help her motivation for Braille.
I think it is so awesome they are making Braille more and more accessible. For the first time this year, Lucy decided not to ask for Legos for her birthday (crazy right?). I should have jumped on that bandwagon earlier, but I heard there are playing cards in Braille too. She’s sure not leaving cards behind any time soon, so maybe we’ll give those ones a try.
The vision loss must be so hard on you, especially Lucy! I am happy that you had/ have some peace.
As for the super senses: I am not a doctor, but I know (and experienced) that pregnant women can smell better than before. So maybe Lucy’s sense of smell and hearing step up? Another explanation could be, that she is more aware of these senses, because she needs to rely more on them.
And last, I think its pretty impressive that Lucy doesn’t only know Latin letters and Braille, but also Chinese symbols!
I enjoy reading your blog about your family life. My mom has Retinitis Pigmentosa, Ushers type 2, vision and hearing loss, she lost her vision slowly. It is true about a super sense, my mom’s sense of taste, touch and smell are very enhanced. My mom is a lot like Lucy in the sense that she is fiercely independent, her house is spotless, she still sews on her sewing machine, making dresses and skirts all the time completely by feel and memory. Lucy will do great things, that independent steak will take her places.
I love hearing things like this!
Even if it may seem like a moonshot, good on you for staying in the game, and also laying valuable groundwork for future bbs families. I work biotech research, and with rare diseases, every single data point is so precious!
(Also I pray a treatment comes soon for Lucy, but I agree with her – she is a super hero with super powers!)
Thank you PS, and thank you for all that you’re doing in research that has potential to help so many!
Sending so much love and many prayers for Lucy. 🥰💕
I have been meaning to write to you for awhile. I’ve been following your family for years and you are super inspiring to me. I especially appreciate your posts about Lucy and her declining vision and for being real about how hard it is. I have two little boys born with severe hearing loss with a diagnosis of eventually becoming deaf. They are losing hearing little by little and we have no idea when they’ll go completely deaf. So this topic really resonates with me and It really helps me feel ‘ok’ when I read how you are handling this and how it isn’t all roses all the time for you. So thank you for being raw and honest. You are a beacon of light for me.
Oh Mary I’m so sorry you and your boys are suffering with loss as well. As I’m sure you are learning, there is so much learning and growth that can come from loss if we look for it, right along with the heartbreak. My heart goes out to you and I’m sending out lots of love and encouragement for you and for them.
sometimes when you teach other people something, it makes it easier for you to learn. I wonder if there is a younger child who is learning braile that she could help teach/practice with or if there is a peer or friend she can teach regularly?
I love this thought, and will have to keep that in mind as she learns more and more.
Your work is great it provide me a great knowledge.