I’ve said this many times before: we don’t know what my daughter can and can’t see. We have to infer from what she does and says. She doesn’t like talking about it but she also can’t really describe it well either.
For example, today she asked me when we were going to Disney. She’s been but she wasn’t really walking at the time. I told her about it and said we’d have to go sometime because there would be a lot I’m sure she could enjoy. I also told her the last time we went I wasn’t able to see well because I’d just had my lens replacement surgeries but she could see fine because it was before she lost her vision. She said, “you mean I could see out of my right eye?” It’s been two-and-a-half years and she doesn’t remember the first four years of her life being able to see out of the right eye, which I didn’t know until today.
But she’s seeing some things and it might be that she’s seeing more than she was or at least she’s putting together what she can see better. I’d move the car seats to the third row this week because my in-laws were visiting so today when my daughter and I got into the car to go to a birthday party she was two rows back.
She said to me, “mom, I see a rainbow umbrella.” I didn’t know what she was talking about until I figured out it was my colorful water bottle sticking up out of the cup holder between the two front seats. It did have the shape of an umbrella. I pulled it in and out of the cup holder and she could follow it as I moved it.
Then she said, “I see a half black circle too.” I pointed to the steering wheel and said, “do you mean this?” She did. She only knows what’s in her world if she touches it or gets up very close and she doesn’t get in the driver’s seat of the car so I don’t know that she knows what the steering wheel looks like. But she saw it from all the way in the back of the car. That’s a level of detail I didn’t think she could see.
She’s also been very light focused lately. She wants the blinds closed because I think the light from outside makes it harder to see. In contrast, she’s wanted the lights on at full brightness (many of our lights have dimmers on the switches) so she can see more.
Is she having some regeneration in her rods and cones and are they becoming more sensitive, seeing more with proper lighting? Is my daughter learning different lighting helps her see? Or is this something like a drop in pressure in her eyes and she’s needing the light to see better? I don’t think it’s the latter because we talked to her about it tonight, but it’s hard to tell because she can’t really tell us. For now I’ll hope she’s seeing a little bit better. That’s always my hope.
The Big Boy Update: My son had terrible intestinal cramps today. He wanted to be cut open (“because you were cut open when you had my sister”) to fix the pain. He tried everything but nothing worked. I called out to him at one point and found him on the bathroom floor. He said, “I’m getting up to go to the toilet now to face my fears.” He wasn’t able to go to the bathroom and instead fell asleep on our bed about six o’clock. He didn’t want dinner and he’s currently asleep in his bed with his clothes still on.
The Tiny Girl Chronicles: My daughter was so excited to go to Layla’s birthday party today. She sat at a table with friends from school eating ice cream together and comparing who has the oldest sibling/parent/grandparent. After that the children at the party ran around inside and outside playing with toys and bubbles. My daughter stayed by me the whole time. I know she wants to play, but she can’t follow the other children at the speed they move in an unfamiliar environment. The children aren’t excluding her, they just have no idea she can’t join in. I don’t think my daughter was overly upset about it, but it does make me sad seeing all the other children running around in the yard and my daughter declining an invitation to be on one of the teams. I know she wants to run, but she knows her limitations. She and I had fun with the bubbles and had some very nice conversations with the other parents who gave her M&Ms and gummy bears from the toppings bar for the ice cream.
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