I just read an article in “Good Housekeeping” (yes, I’m like 80) about a woman who lost her eyesight. She doesn’t ever name her eye disease, but she describes its progression, and it’s pretty obvious that she has retinitis pigmentosa, the same eye disease as Gracie. This woman was 19 when she was diagnosed and she was told she’d probably lose her eyesight within ten years – she would have until she was about 30 to see the world, literally.
Gracie was two when she was diagnosed and her disease was as far advanced as the woman in the article was 12 years after her diagnosis. I suspect her vision is worsening; there are times when she looks at me but is looking over my shoulder. She runs into things. She does not see things. Her eye doctor told us that she’d likely lose all her vision by the time she was a teenager, but it seems like it will be sooner than that.
There are so many things I want her to see. I can’t even list them all – colors, oceans, flowers, clouds, the ballet, Disneyland, relatives, me. I don’t want this for her. I would do anything to make her healthy, to restore her vision. And yet, this is what we have. This is who she is.
It doesn’t bother her nearly as much as it bothers me. She adapts, like she always does. She keeps smiling, picks herself up, has no idea she’s looking over my shoulder. She is the same sweet angel of light no matter what she deals with. Maybe someday I will learn resilience from her. If my heart doesn’t break first.