When Lucy’s choir teacher asked me a few weeks ago to tell him more about what’s going on with Lucy, I realized we needed a little teacher meeting.
Knowledge is power, and I realized none of her teachers really knew what was going on with this girl.
So her “helper” at school set up a zoom call and Dave and I sat there at my desk, all those good people’s faces up on the screen, all trying to figure out how we can help that stubborn and wonderful girl of ours.
The main part of the discussion was centered around her “para,” someone who follows her around at school and makes sure she’s safe, advocates for her. She had been writing me notes/emails every day lamenting this poor woman who undoubtedly Lucy has not given the time of day to meet. Her emails are the best. She is a good writer. But they are also sad because she explained how the para makes her feel like she is dumb and having a para, to her, is a symbol of her inability to do things herself.
We have, of course, talked until we are blue in the face about all the wonderful things people like this can provide:
She can’t see the worksheet for the test = she can have someone read it to her so she can actually show her knowledge.
She can’t see the project she’s supposed to work on as a group because the teacher has turned down the lights = the para can advocate for her and get more light, provide a desk light, etc.
She can’t maneuver through her assignment on her chromebook = the para can help her navigate.
It’s all for her learning and growing.
But no matter what we say, if it has to do with her para it equals that she is incompetent and good-for-nothing (in her mind).
We had a pretty emotional talk after that, sitting in her bedroom, just the three of us. Finally got to the bottom of the fact that somehow, she feels like the more she puts off learning the skills that will help her with her vision loss, maybe she won’t actually lose her vision. No, doesn’t make any sense rationally, but I can understand pushing away reality when something tough is on the horizon.
We all can, right?
She wants to hold on to all the light she can with all her might.
Oh we talked and talked, spilled out love and tears. In the end we came up with a deal to lose the para for now, but accept all the other help that she possibly can so that some day she really can be independent like she’s dreaming to be, armed with all the tools she will be given from letting people help her now.
There have been other developments since then, but for now, I share this little snippet because of this special day coming up tomorrow:
And I want to do my part to raise awareness.
Because Bardet-Biedl Syndrome isn’t well-known.
In fact, it’s a very rare genetic disorder (I think approximately 300 cases are known in the United States).
But there is reason to believe there are actually closer to 3,000 in the U.S. with the syndrome that are undiagnosed.
And the more people that are aware, the more research that will be done.
The more likely researches will be to find some sort of remedies.
No matter how big or small, we will take them.
Lucy will take them, you can bet on that.
And Dave and I want to do everything we possibly can to help.
We are not doing a specific fundraiser tomorrow since we are saving all our efforts for the big Turkey Trot coming up next month (so exciting after taking off a year for Covid).
But I did want to at least post here.
Because there is so much to share even on the web about this syndrome WE WANT TO CURE.
So go check it out HERE.
Sending love to all those blog readers who have had Lucy’s back for all these years, through donations and comments and emails and kindness, buoyed us up in myriads of ways.
SO GRATEFUL FOR YOU!