September 16

We started Sarah’s Oxcarbazepine a week ago in the evening. That is her anti-seizure medication. I’m trying to learn the name of it so I can direct a sitter to give it to her if need be. If I only remember its other name (Trileptal) that isn’t written anywhere on the box or bottle, then that isn’t much help. We think she is handling it ok in terms of side effects, which must be minor if she is experiencing them at all. Today we increase the dose. We have to build up to the desired amount.

Yesterday felt hard. It was the first time this season that I took the girls to gymnastics, and I felt like my presence did the opposite of helping. It seemed like Sarah was purposely trying to annoy me by doing things she knows I don’t want her to do, such as cracking her knuckles and sticking her hand in her mouth. I moved away from her group but stayed in the room. Since her group has two teachers I really think a parent in the room is no longer needed and may be a hindrance. 

We had a couple of parties to attend, and Carl was out of town for the day. I felt like I needed to be with Sarah a bit more, either just wanting to give her some company so she wasn’t eating alone, or to make sure she didn’t do things she shouldn’t. It didn’t always feel easy to go connect with other grown-ups. Sometimes I have plenty of ease and confidence. Sometimes I don’t. Yesterday there were times when I felt lonely, in a way that is unusual for me. It was the loneliness that other parents of kids with special needs describe and I think I am so fortunate to avoid. Sometimes that loneliness can hit like a ton of bricks and it is a mucky load of awfulness because it is me feeling separate and not able to hang out with my friends because of my daughter. That is how it feels. I know it is really because of how I am seeing the situation. Then I judge her and begrudge her. Then I feel like the worst mom, wanting her to be more this and less that. By the end of the second party things were ok again. I connected with my friends. Sarah played independently. Sarah and I had some sweet snuggles and laughs. Still, yesterday was hard. 

Sarah now wants to make pretend food with real ingredients all the time. I do not want this. It was fine when I was ready to supervise. I do not want it all of the time when I am not watching. I do not want to be in the kitchen all of the time. I do not want her using up all of my ingredients so that I won’t have them when I want to make real food. With this and other things, such as being on time, I feel like there is a constant battle within me where I want things to be a certain way, but I judge that and think I should loosen up more, but then feel out of control and frustrated. So I’m frustrated and judgmental and then judging myself as a bad person for my frustration and judgement. 

When an update feels full of difficulty then I am tempted to erase it or edit it, but then I remind myself that I’m probably not the only one who has these moments and maybe all of us can feel less lonely if some of us share the feelings. That is what I love most about some of my favorite writers. So. I’m sure next week will be better. I’m sure today will be better. 

There is one shining note of wonderfulness. This isn’t quite new but I’m noticing it newly and appreciating it more than ever. I realized that one of the girls’ friends really is a friend to Sarah too. Most kids are really Amy’s friends. Sarah doesn’t really play with them nor they with her. But there is one kid who seeks Sarah out! She goes to find her and hang out with her, usually with parallel play. They have an ease together. This feels like a really big and wonderful deal. How are we so lucky to have this person in our lives? Now the only piece I want is for Sarah to feel the same about the other kid and seek her out. Maybe in time. 

Yesterday we sorted through the girls’ pajama drawers. Amy decided to part with a few items. Sarah wanted to keep everything, but she really enjoyed the activity.