Is She Ever Happy?

After my daughter saying to me that she was never happy recently I've been collecting information from her and other people.   It's not that I didn't believe her—she told me twice, very firmly, on two different occasions that she was just never happy.   Do I think she has happy moments?  I do, but I also believe how she feels overall is unhappy.

I consider it a lot like climate and weather.  You live in a certain climate, but you have different weather on a day to day basis.  She's in a wintery cold climate where sometimes the sun comes out and shines on her face.   She seems to have fun, like today she worked with two of her friends to transform her and her brother's room into Halloween central.   (Her father and I weren't decorating for the season to their liking it would seem.)   Did she have fun with her friends?  I think she did, but when I went upstairs for the unveiling, there were undercurrents of tension I got from her about how things had gone.  Her friend, Madison, was simply beaming with the result.  It was clear Madison was happy.

My mother-in-law was over the other day and I was explaining the situation to her and she said she thought a hobby might help my daughter feel happier.   When my daughter came over a few minutes later, Nana asked her about the hobby idea and then said she had seen my daughter happy sometimes.   My daughter's response to her was unexpected, but gave another insight into the mental "climate" she's living in.   Her response to Nana's question about was she happy sometimes was, "I just pretend to be happy.

She has a lot of fear right now.  It's another facet of where she is mentally.  It's throughout the day, as well as night.  Sometimes in the middle of she comes downstairs and climbs on the bed, saying she's heard a noise or had a bad dream and usually it revolves around monsters and fear.  When she was staying with my parents this past week she woke up Mimi one night.  My mother sent me this about what happened:

Reese woke up Wednesday night about 2:00 and came to my bed. I asked if she was having trouble sleeping and she said “yes”. So I went with her to her bed and we talked a while. Then we got up and had a Yasso pop, and talked some more. I put her back to bed and asked was there anything else I could to to help her sleep. And she said, “Yes, not being blind.”.  That was so honest of her, and I answered her as best I could, explaining how everyone was working toward that.  I thought you might want to know.

This, to my knowledge, is the first time my daughter has ever expressed that she didn't want to be blind.   I think we all, including her, assume she would prefer not to be blind, but she doesn't articulate it.  It's going to take several weeks for the medication we've put her on to help with anxiety, perhaps it's starting to make some fractional difference in her mind if she's able to start talking about it.

She and I went to get donuts this morning and we got to talking about how she was feeling.   Or rather I was testing the waters, to see if she thought she was feeling any better.  She wasn't sure yet, she said.  By way of explaining, I started off saying that our brains produce something called serotonin that helps us feel happy.   She blurted out, "well, my brain doesn't make any."   It's another data point on how she's feeling, and it only reinforces to me that we made a good decision to try and help her with medication in addition to the therapy.

She is a child who, for the first four years of her life, could see.   Then within the span of three days, the vast majority of her vision was robbed from her.   For four years she has been subjected to drops, pills, surgeries, restrictive behavior, mandated behavior such as sleeping only on her back for months, all in the hope that her vision would get better.  And in all that, her vision has only gotten worse and worse.   She is independent and intelligent and yet has to ask for help from everyone.  She runs into things constantly—her legs have been covered in cuts and scrapes for years.   Things happen around her that she doesn't understand all day long and the people around her that love her are learning how to best serve her blindness and don't always know how to best talk to her or help her.   Putting it in that perspective, I don't wonder why she's never happy.

Hopefully, she will be though.   When I tell people she will be just fine, I truly believe that.   She has to accept the blindness, embrace it.   Once that happens I think she's going to be more than a handful to deal with (not that she isn't already) because she's going to put a whole new light on the phrase, "self-advocate".   She's going to make sure she's got all the opportunities she can have to lead a rich life.   She's going to hold us, her parents, accountable for helping make that possible.   I'm looking forward to it.

The dog, in the meantime, continues to help regulate my daughter like no pill ever could.   Here is a picture from yesterday morning.  It may look like the dog is wearing pajamas, but it is my daughter hugging the dog, and the dog just letting her, calmly, warmly, lovingly.

The Big Boy Update:  There is a battle of the volume my son and daughter play.   They don't really realize they're doing it, but it happens a lot.  My son turns on the television and starts watching something.   He's reasonably good with volume and doesn't complain if we ask him to turn it down but when his sister goes into the kitchen and starts playing an audiobook or game on Alexa, he turns his volume up to compensate.   Then she turns hers up and then he reacts.   They do this mostly without a word to each other.  It takes me, calling out from the other room for them both to turn it down for them to drop the volumes back to reasonable levels.   They used to argue over this, but they've learned the TV and Alexa will be turned off if they don't comply.

The Tiny Girl Chronicles:  My daughter found a polyhedra shaped object on one of the tables at Mimi and Gramp's house.   She wanted to know how many sides there were.   She and Mimi realized it would be hard to count because you might lose your place as you went around counting and either over or undercount.  My mother thought about putting sticky notes on each side and numbering them as they placed them on.   As my mother was getting the sticky notes and a pencil my daughter said, "Mimi, why don't we just put the sticky notes on the sides, then pull them all off and count them when we're done?"   My mother told my daughter she was impressed with her thinking of a more efficient and easier way.