On the ride home I asked her about what she’d done with Dhruti and then I asked if she remembered to talk to her about how she’d been feeling. “About what, mom?” she said. I reminded her of the day she say on the floor in her room, crying and saying if only she could see and how right then I told her I was asking Dhruti when she was available.
My daughter wasn’t bothered by the thought of talking about her feelings on being blind it seems because she said, “sorry, mom, I’ll talk to her about it next time.” Then I though I’d ask her some more information on how she was feeling in general. I asked her how happy she felt lately. She thought about it and said, “a five” and then added, “one a scale of one to ten” when she realized that wasn’t enough information as a number alone.
I asked her how she felt when she had been so unhappy, before we got the Prozac to help her feel better. She said pretty quickly, “a three.” I wondered if she thought more medication might help even though we didn’t plan on increasing her medication based on observed behavior. I asked her if she thought more medication might help, to which she immediately responded, “no, I don’t think I need more.” That was good to hear, I thought.
We talked a little more about it and she said she wasn’t down at a five all the time. It’s frustrating and lonely for her at home with no friends to play with over the holidays and remote learning on top of all the blindness to deal with and accept. So she has down times, but she also has fun every day and is happy for some of the time. Hopefully more of the time than less of the time, but for now, I’d gotten more information than I’d gleaned from her in possibly ever on how she felt.
We had a half-hour drive so I started telling her about what happened when she lost her vision initially. I thought she knew the story inside and out, but she really didn’t. What was interesting was she said to me at one point that she had three very clear memories of things she remembered seeing.
Again, this is information I would have loved to have from her, but it wasn’t coming out until she was ready to tell it but more likely until she realized it was something she could piece together and articulate. She was young, not quite four when everything started and it went back a full half-year before when we did eye tests.
The first memory she said was, “so clear” in her mind. She was in a doctor’s office and I had some pieces of paper and was trying to get her to read the letters on them. It was a brightly lit room with a table on the other side. We sat together until the doctor called her in and I kept trying to see if she could tell what the letters were on the papers. She said she really couldn’t tell so she just told me something as an answer and then the doctor called us in.
That would have been Dr. Grace, her pediatric ophthalmologist, and the pages of letters were huge letters taking up most of the page, or perhaps they were animals. I printed out a lot of things in black and white silhouette to try and determine what she could see. She did get tired of the testing but I was panicked enough as a parent that I was less worried about upsetting her and more worried about what was happening to her vision.
The second memory was of her playing with Paw Patrol characters on the bed. I told her that would have been in Detroit on one of the trips to see Dr. Trese. She said she had to stop playing with the characters because she had to get her finger pricked.
She then told me, “the last memory is with dad. Dad was rolling around the injection machine with the wire going into your arm. We were playing fun things with handprints. I wanted M&Ms so we went to the food court with the injection thing. I remember the brown tiles on the floor and some shelves low down that had things in them.”
This I believe was during the early few months when she was receiving infusions in the hope that what had happened to her eyes was autoimmune and could be restored in part with IV steroids. She had to have the medication drip into her arm for a good while and apparently one time she and her father went to the kiosk on the ground floor to get M&Ms.
I asked her if she remembers what things looked like in these memories. This question was hard for her because she says she doesn’t remember seeing. But somewhere in her brain she remembers something and understands it in some way. She didn’t have an answer other than she doesn’t remember seeing even though she does have some memories.
I asked her if I could write these memories of hers up in the blog here tonight so we could have them written down to always be able to remember them. She said, “of course, mom.”
The Big Boy Update: I just found some things that came out of my son’s backpack from the start of the winter break. There were two books to read in the stack. Was he suppose to have read those two books over the break and now he’s going back to school early next week and hasn’t read any of them? He played it off, but I’m having him read some every day just in case we totally messed up the holiday reading assignment he isn’t sure he had.
The Tiny Girl Chronicles: My daughter came in tonight and said she’d had another memory of seeing she’d forgotten. It’s just like memories go in that’s it’s just a trivial memory of a single event on a normal day in her life. But she remembers it. She, her brother, and Madison were playing in the back yard on the mini-tramp we got when they were very young. It has long since rusted away but for years moved all over the back yard. My daughter said at this time we still had the rock climbing wall on the play structure and somehow one of the little legs fell off the mini-tramp. My son teased Madison that it was her leg that had fallen off. That was the memory. She couldn’t describe what it was that was a seeing part of the memory, but she knows there was some sight involved. It was definitely during the timeframe she could see, based on her descriptions of things.
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