There are small moments in parenting a child with vision loss that stop you in your tracks. This was one of those moments for me, and it changed the way I think about gratitude, urgency, and the people helping us fight for Lucy’s future.
A Moment That Stopped Me in My Tracks
A couple months ago we decided to “give” a kitchen sink to Lucy. I told her she “got to” be in charge of keeping that special thing spick and span all the time, and that she could even name it if she wanted. She didn’t jump up and down in glee or anything, but she has been pretty great at getting right to it when we tell her it’s looking neglected.
But that’s not the point of this story. This story is about the day when she thought she was done with the breakfast dishes. I reminded her not to forget the clear cup sitting right there on the side of the sink.
She nodded with a cute little “of course I won’t forget that one” kind of a nod, and then reached out to grab it. But instead of reaching the cup, she reached to a spot a few inches away and started to feel around the counter trying to find it. She was looking right at it, but couldn’t see it.
My heart froze.
Facing the Reality of Vision Loss
It’s weird how a day can be plugging along just fine, all is right in the world, and then suddenly everything stops. You wonder what in the world the future holds.
How much can she really see and how much is she just compensating for? How many times does she act like she can see and get where she’s reaching right so I don’t even notice? And how quickly is this going to go downhill? Or is she going to be one of the fraction of the lucky ones with her syndrome who will keep the vision that so many of us take for granted every day? What does her future hold? Will she be able to continue with her love of reading and art and Legos? Is her sense of feeling and smell starting to take over to help her navigate her world?
I don’t know the answers to any of those questions. Most of the time I try to close them out and push them away. It’s easier to concentrate on the goodness of right now.
But things like that clear cup story start to prick my awareness and my eyes will fill up and my own kind of darkness looms heavier. I know we have to be proactive. We have to fight. Because the vision time bomb is ticking. Most BBS kids lose their vision in middle adolescence, and I’ve written about that fear and that fight across many posts about Lucy’s journey over the years.
The Turkey Trot: Supporting BBS Research
So each year I’m even more grateful than the last when the Turkey Trot rolls around, because it’s an automatic fundraiser that makes a difference for BBS kids. I’ve neglected to ever tell the history behind it.
Five years ago a friend had a grand idea to start a Turkey Trot in our own community, something to build togetherness as well as help a good cause. He recruited Dave and a couple of other friends to put it together. As they looked for good causes, a favorite local charity called Brain Food came up, along with fundraising for BBS kids since they wanted to help children specifically. So they connected that first Turkey Trot to the “I Love Lucy Project” my mom and I had started a couple years before.
Each year those ideas have expanded and become bigger. The Turkey Trot started in the retention basin down the street from our house.
Now it’s at a big outdoor shopping mall filled with so many great people and all kinds of activities on the sidelines.
The funds raised for BBS kids the first couple of years went directly to the Foundation Fighting Blindness since we didn’t have anything more specific to contribute to at that point. We just wanted to fight blindness any way we could. But we found that was just a drop in the huge bucket of vision research, and we knew that time was ticking. We wanted serious research specifically for BBS kids with their unique kind of retinitis pigmentosa.
Grateful for Friends, Family, and Community Helpers
With the help of the BBS community we’ve figured out a way to make those funds work specifically for BBS kids through supporting the clinical registry that helps researchers help our kids. Other families have done their own BBS family fundraising too. Good friends in the BBS community held a great golf tournament to raise money and others are joining the cause.
All of us BBS families know that vision research, especially the pinpointed kind we need, takes funds. Lots and lots of them.
Reflections on Parenting a Child with Vision Loss
Back to my original point: I am so incredibly grateful for everyone who works so hard on the Turkey Trot every year. My talented sister-in-law made the logo come to fruition for us, and I am so thankful for that. Friends have helped brainstorm all kinds of ideas to get information out about BBS on the big day and to make it fun for families. So many people have put in hours on end coordinating logistics, and we feel the love deeply as we work to help BBS families.
Come join us on Thanksgiving if you’re local! We’d love to have you join in the fight to help these kids keep their vision. Research is coming so close we can almost taste it.
Here’s to hoping we can help Lucy and all the other BBS kids see those “clear cups” in their future, as well as seeing the people they love and the sun setting on a beautiful day.
More from Lucy’s Journey
If this resonated with you, here are more posts from our fight for Lucy’s vision:
oh how i love that beautiful creative logo! and oh how i love lucy and your sweet inspirational family.
wahooooo shawn this is awesome. the name and logo are perfect!!! love you and love Lucy.
I love the logo!! The red glasses are perfect!!
I wish we didn't live so far away! (We're in Utah) We would totally come!
Your SIL did a great job on the logo!
Is she getting any skills at school or elsewhere to help her 'see' via her other senses? Do you have a book reader for her or a device where she can listen to books? Access for Braille titles?
Shawni has posted several times about Lucy's amazing braille teacher. I think it is wonderful that Lucy gets to bring a friend with her for braille time. A nice way for Lucy to not feel excluded or different for learning braille.
I'm thinking as a former librarian, in a different state, that I never noticed her reading Braille books in the photos posted. I do remember the Braille type writer. It certainly tugged at my heartstrings when she mentioned uncertainly about her love of books and the impact vision loss would have. She may already know about how to get materials. Even if the local library does not carry any or many there should be a way to get listening books and Braille titles through them. Or they can pass you on to an org in your state that does it. There were also movies made with the vision challenged in mind, describing what is happening on screen. With technology there could be newer devices of help. I don't want her to lose her stories and imagination. I also thought of life skills and independence. Does the Braille teacher also teach things related to independence? Would an OT? My son also has special needs, but they are not vision related.
I certainly hope there is a breakthrough.
The story of Lucy and the clear glass tugged at this mother's heart so much. Tears.
The logo is perfect. So creative. Wishing you all the best at the upcoming event! Lisa
Such a scary story! It's so hard to tell just how much she sees but I'm glad she's under your watchful eye. We are so excited to be there to help with the Turkey Trot this year. Can't wait to actually have a chance to see it in person! I LOVE LUCY!
The part about Lucy not seeing the empty cup/glass really touched me, it must've been really hard for you to watch her doing that.
I'm so glad that you have a charity that is helping you with these things.
Your sister-in-law's picture is brill, I especially like the red colour of the glasses.