Tuesday, November 17, 2015

gratitude for the people who help us keep Lucy's vision

As I mentioned a while back, a couple months ago we decided to "give" a sink to Lucy.  I told her she "got to" be in charge of keeping that special thing spick and span all the time (for the random dishes through the day and after breakfast) and that she could even name it if she wanted.  I mean, that's exciting stuff, right?  

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 from the cup 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.

It's weird how a day can be plugging along just fine...all is right in the world and then suddenly everything stops.  And 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?  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 that 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.  And most of the time I try to close them out.  I push them away.  I want to concentrate on the goodness of right now.  

But at the same time I'm trying to concentrate on the good, little instances 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.  And we have to fight.  Because the vision time bomb is ticking (most BBS kids lose their vision in middle adolescence). 

So each year I'm even more grateful than the last when the Turkey Trot rolls around.  Because it's an automatic fund raiser that makes a difference for BBS kids.  I think I've neglected to ever relate the history behind that great thing:  

Five years ago our friend had a grand idea.  It was to start a Turkey Trot in our own community.  Something to build up our community "togetherness" as well as to help a good cause.  He recruited Dave and a couple other friends to put it together.  As they were looking for good causes to put their efforts toward.  A favorite local charity called Brain Food came up, but also of course fund raising for BBS kids came up since they were looking to help kids specifically and we needed all the help we could get.  So we connected that first Turkey Trot to the "I Love Lucy Project" my mom and I came up with a couple years before.  

Here is the second year when it grew a little bigger...

Each year for the last five years those ideas have expanded and become bigger.  The Turkey Trot started in the retention basin down the street from our house the first year and now it's at a big outdoor shopping mall filled with so many great people and all kinds of activities going on on the side-lines.  The funds we raised for BBS kids the first couple years went directly to the Foundation Fighting Blindness since we didn't have anything 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 (other BBS families along with us) knew that time was ticking and we wanted some serious research specifically for BBS kids with their unique kind of retinitis pigmentosa (the vision loss associated with BBS).

With the help of the BBS community we've figured out a way to make those funds work specifically for BBS kids through starting the clinical registry that helps researchers help our kids.  Much more on that over HERE.  Last year we were in China and weren't able to coordinate the BBS side of the Turkey Trot as well as we wanted to, so we're excited to run with it this year, as other families have done through their own family fund raising (more about those efforts HERE).  Our good friends in the BBS community just held a great golf tournament to raise money and others are joining the cause.   I loved this great thank-you video they did after the tournament:


Thank You Golfers! from Alms Creative on Vimeo.

All of us BBS families know that vision research, especially the pin-pointed kind we need, takes funds.  Lots and lots of them.

So back to my original point: I am so incredibly grateful for everyone who works so hard on the Turkey Trot every year.  So grateful for my talented sister-in-law who made this idea of a logo come to fruition for us:

So grateful for friends who have helped us brainstorm on all kinds of ideas to get information out about BBS on the big day and to make it fun for families.  So grateful for so many people willing to put in hours on end coordinating logistics and for all the love we feel as we work to help BBS families as well as the kids who benefit so much from the other charity involved.

I will be trying to update the I Love Lucy blog with new pictures of BBS kids and their stories in the next week, so check it out if you'd like.  And 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.  

10 comments:

  1. oh how i love that beautiful creative logo! and oh how i love lucy and your sweet inspirational family.

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  2. wahooooo shawn this is awesome. the name and logo are perfect!!! love you and love Lucy.

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  3. I love the logo!! The red glasses are perfect!!

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  4. 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!

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  5. 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?

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    1. 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.

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    2. 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.

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  6. 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

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  7. 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!

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  8. 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.

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