Grooming

I really don't like clipping Rachel's fingernails. I can trim mine to the end of my finger and still have almost 1/8 of an inch of fingernail before it attaches to the skin. If I trim Rachel's nail at the end of her finger, I've cut it too far. She doesn't hold still very well while I trim them, but I try not to leave any sharp edges. I have to be so careful not to cut them right where they attach. I think I've only really cut them too short twice (only one finger each time, in almost 20 years, that's pretty good), but I remember those times very clearly, and I don't want to repeat the experience. Consequently, her fingernails are frequently a lot longer than they should be.

Rachel has had problems with super dry skin and eczema, so I have to be a little careful how often she bathes and what soap I use on her. The other problem (possibly related?) is that sometimes she has a build up of dead skin. Especially after she's been in the water either bathing or swimming, there will be times when if you rub your hand on her, a lot of dead skin comes off. This is especially true around her ankles and by her collar bones and neck. No idea why. I had a physical therapist looking at her ankles and feet one day, and took her shoes and socks off. She had been moving around a lot and was a little sweaty. As I took her shoes and socks off I noticed an overabundance of dead skin that could easily be brushed off. It looked like I hadn't bothered to bathe her forever, but in truth she had a bath the night before, and while I don't always scrub every inch of her every day with soap (because of the dry skin issue), I know I towel dried her ankles. I'm not at all sure how that much dead skin was still there. I wonder if it's related to the fact that she doesn't ever scratch. Even when she has mosquito bites or something like that she doesn't really scratch them. If she's got a bite on her arm and something rubs it and causes it to itch more, she might rub it a little with her hand, but she never scratches herself with her fingers. I think that your skin would itch if you had a build up of skin that needed to come off, and most people would scratch and it would come off. But she doesn't. I know how uncomfortable it is to have something itch and not be able to scratch it, I wonder if she doesn't feel things itch, or if she doesn't know how to scratch to make it go away. One more mystery....

The other day I accidentally picked up her brush to brush my hair instead of my own. After one swipe I was very aware of the switch, because there is one bristle on her brush that the little tip has come off from, and it scratched my head. I had no idea I was scratching her head with her brush. She's never given any indication that it hurt her. I guess it's time for a new brush.

There are so many opportunities for guilt every day. It's amazing that I can even function. And while I used to believe that every year she'd be a little closer to independence, the truth is that she does less now than she did six years ago, so no one can possibly guess what the future will bring. In a lot of ways it's actually more difficult and time consuming to care for her now than it was when she was little. I don't begrudge the time spent, however. I'm happy to help her however I can, I just hate it when I do it wrong.

Sigh of Relief

When Rachel was little her immune system wasn't very strong, and it seems like any time anyone else got the least bit sick she would become very ill, have seizures, and end up in the emergency room. As she got older her immune system got stronger, and eventually she got to the point where she didn't always get sick, and when she did get sick she didn't always have seizures. However, I do still worry more about her than the rest of us. She does still occasionally have seizures and she usually doesn't tell me she's sick, so I have to figure it out by watching her.

So, we've all been sick at our house. We've all had colds, but they've been pretty bad colds. Horrible sore throat, headache, low grade fever, coughing. Lots and lots of coughing. General body aches and pains (as in, I feel like I got hit by a truck). Not pleasant at all. We've all had it, except Rachel. I've watched her like a hawk. Knowing how absolutely horrible I felt, I didn't want to make her go to school if she was ill, and I'm always worried she'll have a seizure when I'm not right there with her. One night she sneezed, just one sneeze, and I almost kept her home from school the next day (yes, I do overreact on a regular basis). I have asked her if her head hurt and checked her neck for swollen glands so many times I'm amazed she's still letting me anywhere near her. As horribly ill as the rest of us were, she never got sick. It's been a week or two since any of us have had any real symptoms, and she's still symptom-free.

Sometimes it's great to just sit back and enjoy what didn't happen.

Pajamas

Dressing seems to be the big issue around here lately. Yesterday I sent Rachel into her room to get her pajamas on, which I had already laid out for her. I was doing something in the other room, so I just listened and when I couldn't hear her moving around I would call to her to hurry and finish. After about 10 minutes I went in her room to see how she had done, and was pleased that her pajamas were on and all her clothes were apparently in the hamper, since I couldn't see them anywhere. I sent her in to kiss Daddy goodnight, and started to turn her covers down so I could tuck her in. When she came back in I had to laugh when I realized that she had put her pajama bottoms on over her pants. While we were fixing that, I also realized that she had ripped her pajama top, sticking her arm through a new hole under the sleeve, so the sleeve was just hanging down over her arm. I guess she'll need new pajamas. We quickly fixed the problems and I tucked her in bed (after finding and taking her shoes out of the hamper, so we wouldn't be searching for them in the morning).

I have been trying to find ways to help her be more happy, and one of the things I have done is to make sure she looks at me more often, and that I show her a very happy face, and that I make sure she sees me laughing and smiling. I think it's helped. She doesn't always completely avoid making eye contact, but at times if I really want her to look at my face, I have to work at it a bit. A good share of the time if I can get her to see how happy I am, it kinda rubs off on her a bit. Which is awesome. Last night, with the pajama problems, I suddenly wasn't sure what to do. I laugh at those things because I choose to see humor in them. I can't go back in time and fix it, and being upset/annoyed doesn't do anyone any good, so I laugh. Lately I've been going out of my way to make sure Rachel sees me laugh, and it seems to help her (she'll laugh when she just hears people laughing, and seeing it does even more). The dilemma I faced last night, however, was a concern that she would feel that I was laughing at her, which is a totally different thing. I'm not too concerned that she'll start to dress oddly just to make me laugh, but I don't want her to have her feelings hurt. So, I just made sure she saw me smile and so she knew I was happy, but I didn't show her how funny I thought it was. She was smiling when I tucked her in bed, so that was great. I'll have to maybe experiment a bit to find out if I can laugh really obviously at her little problems without it hurting her feelings.

Another cool thing happened last night. After she eats her dinner she takes her plate to the sink, but last night she just kept holding it without putting it down. I finally asked her if she wanted more, and she said "yes." She ate another fairly large helping. I absolutely love it when she eats and I don't have to make her do it. Hopefully her appetite is picking back up a bit. I'm hoping she'll put a few more pounds back on.

Awkward!

I make a point of being in the living room when Rachel gets home from school. I ask her how her day was, to which she usually says something like "Is too, he's a girl" or "It's not your birthday" or some such thing. I immediately check her backpack (because if I don't empty it, she usually does and then I don't see what she brought home). I comment on whatever is there, and then have her take her backpack and her jacket and hang them up. She uses the restroom, and then she's free to pick whatever she wants to do for a little while. Lately that means she either sits on the couch in the living room or on her bed in her bedroom and looks out the window.

A couple of days ago, our routine got a tiny bit turned around. I was in the kitchen and I took her backpack, but the routine stopped there. A few minutes later I went in the living room where she was sitting, and asked her to take her jacket off while I went in the kitchen to grab her backpack. Returning just a moment later, I was a little (a lot) surprised (shocked) to see her sitting on the couch with her shirt and her jacket on her lap. She had taken her jacket off as I had asked, but she had also taken her shirt off with it. I quickly put her shirt back on her. She was sitting in front of the window where people frequently wave to her from the sidewalk or street, since they know she likes to sit there and watch outside, so speed was an issue. I'm pretty sure the only ones who saw her were me and her younger brother, who happened to walk in just as I was putting her shirt back on her (his "well, that was awkward" comment more or less summed it up). She was completely oblivious to the problem. As funny as this was, I have since watched her more carefully when I've asked her to take her jacket off. It might not have been so amusing in a different context, so I can at least be grateful for small favors. Which reminds me, I should definitely tell her teacher at school.

Rachel struggles with getting dressed in the morning. Often, she just stops and stands there, waiting for me to prompt her. If I'm in the room with her I just have to remind her to hurry, or even just say her name, and she gets back to work. If I leave for a minute, she usually waits for me to come back before continuing. I know she can hear me coming back down the hall, and she tries to hurry and pick up where she left off. Unfortunately that frequently means that she takes off the shirt she just put on, or tries to put a shirt on when she hasn't taken off her pajamas yet. She just grabs whatever is nearest at hand and tries to do something with it. Sometimes it works out right, but more often it doesn't. She usually doesn't do that on Saturdays when she can get dressed a little bit later, so I think it's just hard for her to focus properly in the morning. Working under the assumption that she might need more sleep, I've tried putting her to bed earlier, but it hasn't seemed to help. A lot of the time she wakes up early on Saturdays, even if she doesn't have to, so I think it's really just that she's been awake longer on Saturdays by the time she's actually trying to function. I'm not about to start getting her up at 5:30 on weekdays just so she can be awake for awhile before trying to get dressed, so I guess we'll just keep doing what we're doing. It adds a touch of humor to my morning, and that can't be all bad.

Ouch

Rachel has struggled, off on on, with canker sores in her mouth. She had a few a month or so ago, and I could tell they bothered her because she would complain when I brushed her teeth. I was able to see where they were and try not to hurt her. I kept her mouth clean, put some medicine on them, and they went away. Just recently she pulled away again while I was brushing her teeth, and I found more sores. I have done everything I can think of, and they won't go away. For awhile I thought they had healed because it's really hard to see them in her mouth unless you really look (she doesn't particularly like to cooperate for that) and she had quit complaining if I accidently touched them while brushing her teeth. But they're still there. She seems to have accepted that they hurt, and she doesn't acknowledge the pain anymore. That really bothers me. Pain is there for a reason. It helps us to know something is wrong, so we can fix it. I now wonder how many other things hurt her, and she just accepts it. When we adopted her at 9 months, her former foster mother told me that she was just barely starting to cry again. She had quit crying because it didn't help. I wonder if she has quit complaining about the sores in her mouth because it didn't help. I can't possibly describe how guilty I feel thinking that I can't fix this for her, and she's given up asking for help.

I did a little research, and apparently no one knows exactly what causes canker sores, or how to get rid of them, although there is a ton of information that might work. One of the items that is listed prominently as a possible cause of canker sores is sodium lauryl sulphate. It is the ingredient in toothpaste that makes it foam. I spent an incredible amount of time in the toothpaste aisle of several grocery stores, reading labels, trying to find a toothpaste that didn't have the chemical in it. There aren't any. Apparently only health food stores carry toothpaste that doesn't contain this ingredient, and they were closed by the time I figured that out. It is totally unclear if it will even help the canker sores go away, but I will try anyway, because I know that she hurts and I have to try something. How ironic that in my efforts to keep her mouth extra clean so the sores could heal, I might have been making them worse by putting even more of the chemical that caused them in her mouth. I am also concerned that the sores might be at least part of the reason why she's not eating very well sometimes. It certainly isn't the only reason, but it could be a contributing factor.

I wish I could just fix it for her, and at the very least I wish I could somehow tell her that my inability to fix it is not from a lack of caring or desire. I want her to know that I would do anything to help her be happy and feel good. I want her to know she should keep telling me something hurts until I can find a way to fix it. But I can't. I hate that she hurts, and I hate that we can't communicate well. I'm going to go buy some new toothpaste and spend some more time on the internet, trying to find a solution. Wish me luck.