My daughter is a typical seven-year-old in many ways. She wants to play with her friends, loves candy, doesn’t want to go to sleep at the end of the day, likes to defy her parents and loves animals. She’s also not a typical child because she’s suffered a trauma that’s repeated again and again through constant medical interventions and the incremental and repeated loss of more and more of her vision.
That trauma makes her life something we, as parents, constantly struggle with. What is age appropriate behavior and what is related to her processing, coping with, struggling through and dealing with the loss of vision and realization that everyone around her can do something she can’t?
I have a weekly call with one of our therapists to discuss things that happen in our family and with the children. The conversation typically goes like this, “Here’s what happened. Here’s what we did. I think we could handle it better and/or I didn’t like how we handled it.” What happens during the dialog that follows is commonly me finding out things weren’t what I thought they were. Things I thought were reasons or motives for a child’s behavior may have been something else entirely. And the other part is having to answer questions on why I acted in the way I did and what were my motivations/stressors/expectations and how that affected how things went.
It’s a very good hour spent. To be honest though, I don’t usually look forward to the hour-long call because it’s a hard hour. But it’s worth it. We talk about one or both of the children, depending on what’s transpired over the past week. The call today was mostly about my daughter. We talked about how she handled things over our vacation to Maui.
The first was how my daughter has started to say, “it’s a seeing thing.” When she says this, it’s because she’s bored or frustrated because she can’t experience it. When we got in the car from the airport, Nancy started explaining what we were seeing on each side of the car. My daughter was flat out rude, saying things like, “STOP TALKING!” and being very vocal in not wanting to hear about things. I think we had a misconception that describing what was outside the windows would be interesting to my daughter. Sometime she just might not care or want to know—even if this vacation was suppose to be an educational one about the Hawaiian islands.
Liz said my daughter saying she wasn’t interested in something because it was a “seeing thing” is a big step in my daughter accepting her lack of vision. We tried whenever we could on the vacation to do things that would be interesting to my daughter, but truthfully, some things we couldn’t do anything about. There was a boat ride, a submarine trip and a helicopter flight that were about 95% visual. She participated and did her best, but she knew she was missing out on things and it had to be sad in a way.
That brings me to the second thing—the rock named “Rock”. On the day we were leaving we visited a national park in the mountains and swam in a stream. My daughter picked out a rock and before we realized we couldn’t take rocks out of the park, she decided she wanted to keep it. She had held on to that rock for about fifteen minutes—fifteen minutes of time in which she bonded with this rock—and then she found out she had to leave it there.
She was distraught. This was no tantrum, she was incredibly upset about the rock. She had us take a picture of it. She wailed about it in the car. We got to the airport and she talked about how sad she was. Before we got on the plane she cried about it and when she woke up later on the plane she cried about it some more. She knew the rock was gone. She knew it wasn’t coming back. She was grieving and I didn’t know what to do. We tried to honor her feelings. She wanted to know if we could get some clay when we got home and make a model of Rock so she could remember it. I said we surely could.
When we got home for the next two nights she came downstairs after going to bed saying she was having trouble going to sleep (which never happens) because she was sad thinking about Rock. I have never seen her that upset over a single thing before. And this wasn’t the only thing that this happened with on the trip. There was another item she cried about for two days and only moved off that item when Rock took its place.
When I told Liz about this she said she thought this could be my daughter actually starting to grieve her loss of vision. It seems like after three years she would have done so, but it doesn’t work that way in a child, especially one that young. She’s only understanding the full implications of what she’s lost now and is getting to the point where she’s processed it enough to begin to grieve. And this trip, while wonderful in many ways for her because she loved many things about it, also emphasized in her mind all the things she couldn’t do because she couldn’t see.
She was transferring the grief of her vision into something concrete: a rock. I talked to Liz about how we can best support her as the grief continues, which may be a long process and may come in spurts. Being there with her is the best thing we can do, honoring her emotions and feelings and letting her know we’re here with her is sometimes the best thing we can do. I think the dog does the best at this. I’m very glad we got a dog.
The Big Boy Update: My son asked about Roman numerals last night as he was getting ready for bed. He mentally got it so fast I was doing that thing we parents do sometimes, thinking, “my child is so smart”. It’s fairly straightforward rule-wise, but he got it so quickly, saying, “give me another number!” and then answering what 859 or 470 or 23 was in Roman numerals. We got in the car today after school and he wanted to review again. I told him there were some really big Roman numbers I grew up seeing all the time I’d show him when we got home. When we got in the house I pulled up an image of an old movie poster on my iPad and told him to find the Roman numerals on the page in small print. He found them and then figured out it was a number, in this case 1984. What was the number, I asked him? He guessed it was a year. I told him it was the year the movie came out and I had no idea why movie release dates were always in Roman numerals, but they were.
The Tiny Girl Chronicles: My daughter asked me while we were walking around in the airport in Maui, waiting for our plane to board, “what’s your least-favorite word, Mom?” I said I don’t think I’d ever thought about it before and I didn’t think I had a least-favorite word. Did she have one? She said yes, her’s was ‘unconscious’. I agreed, that wasn’t a good word in almost any circumstance and maybe it was my least-favorite word too now.
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