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.