And she's gone....

Last Thursday Rachel had a seizure at school. It wasn't long, and didn't seem to bother her very much. I picked her up and she took a nap for an hour or so when she got home, and then she seemed more or less back to normal. Whatever "normal" is. I put her to bed an hour or two before we went to bed, but she got up when we were going to bed (which very rarely happens) and while I was tucking her back in bed I noticed a small wet spot on her pillow. It might have just been drool (not particularly normal for her), but it also might mean that she had another seizure (she always drools when she has a seizure). I don't think she slept well, so I kept her home on Friday to keep an eye on her. she seemed like she was fine, but was more tired than usual. She's been talking a lot more lately, and has been more interactive. With that usually comes a few more meltdowns (more than fair trade-off in my opinion). Friday night we went to a play her brother was in and she fell apart right before I took her in to sit down. I finally got her to calm down, and then she was fine. Saturday night we went to a Christmas party and she saw a friend she's known since she was 12, but hasn't seen for a long time. She smiled and talked with her and even called her by name! I have been enjoying her so much lately. I feel like I can almost have a conversation with her, and she's interested in things and excited. Sunday was an up and down day, but mostly up. She talked a lot about monsters and spiders, but she was mostly happy and interactive.

Sunday night as we were going to bed I heard her in her room and went in to check on her. She was sitting up and I think she was laughing. She kept saying "it's funny!" over and over, but I couldn't get her to look at me, and I could tell she wasn't really "there." Monday morning she just smiled quietly all while she was getting ready for school, but didn't talk and I had to do practically everything for her. I hoped she was just tired, but her teacher called from school and said that she seemed really confused all day, and wondered if she's always this way after a seizure. The answer to that is no. She does this sometimes, but I haven't been able to find a reason for it. Her abilities come and go, but even for her this is a dramatic change. She didn't hardly eat anything, and had to be fed or reminded to even eat what she did eat. This morning she was sitting up in bed when I went in to get her up, but I have no way of knowing how long she had been sitting there. She couldn't seem to figure out how to do anything. Even vocal prompts didn't help, and I had to physically help her do everything, so I decided to keep her home. For the last two hours she's just stared out the window, and I can't get her to say more than just a word or two, and not anything that really makes sense. She is rocking back and forth, which is unusual for her. If I call her name she will sit up straight, but then immediately goes back to rocking. Her face is a little bit flushed, but she doesn't have a fever. I'm taking her in to the doctor in just a bit to see if he can find anything obvious wrong with her. She doesn't always say anything when she's sick. I'm hoping we can figure something out soon. The silence and the vacant stare break my heart.

Obsessions

Rachel's bus comes about 7:05 in the morning, so we're usually in a hurry. I only get her up 20-30 minutes before she needs to leave because I want her to get as much sleep as possible. The easiest answer would be to put her to bed earlier, but that doesn't work because she doesn't go to sleep if I do. She gets up and plays, or lays there in her bed and talks to herself, which is honestly really cute, but not very restful. The biggest problem that I have with her in the morning is that when she's tired, her obsessive compulsive nature kicks in overtime. This morning when she got out of bed she wouldn't go in to the restroom until she had carefully laid her bunny, monkey, and dog that she sleeps with on her pillow. In a line. And it had to be straight. I kept telling her it didn't matter because I was just going to move them to make her bed, but she "couldn't" let it go.

She has gotten a lot better at dressing herself again. I can lay out her clothes and she will usually get them all on in the right order relatively quickly. At night I can even just ask her to go get ready for bed and she will go use the restroom, find her pajamas under her pillow and put them on. She even puts her dirty clothes and shoes where they are supposed to go, and hasn't even had too much trouble if her pajama top was wrong side out. She was able to fix it and put it on by herself. I am thrilled and happy for her. It certainly makes my job easier, but even more important, it gives her a sense of accomplishment and independence that I know she enjoys. So this morning she was getting dressed, but it was taking forever. I finally went in and watched her and realized she was doing the "pull up, adjust, pull up again, readjust, pull up again, adjust once more" thing with her underwear, pants, socks, pretty much every item of clothing. I finally sat with her while she dressed and finally got her fed, her hair combed, teeth brushed, etc., just as the bus pulled up. I was trying to grab her coat and backpack to put on her, and I realized she had disappeared. I found her in her room, trying to hang a balloon on a knob on her dresser. She brought a helium balloon home a week or more ago, and so we looped it on the knob so it wouldn't fly up to the ceiling where she couldn't reach it. It's been laying on her bedroom floor for awhile now, and I was trying to decide when I could get rid of it without making her sad. This morning she was determined to hang it on the knob so it would float again. How do you explain to someone who can't really understand, why a balloon won't float anymore and that their bus is here and they have to leave right now, when she's obviously having an obsessive compulsive kind of a morning and "needs" to have the balloon put away to feel comfortable? I finally got her coat and backpack on her and got her out the door. She wasn't complaining on the way out, so hopefully she mentally moved on and can have a happy day. It's so tempting to keep her home when she's not super happy. I don't know if I'm trying to protect her or the people with whom she will interact, but I feel the need to be the one responsible for her if her world isn't in order. I've had to let go of that a lot because she needs to get out and be with other people. It's not healthy for her to be home with me all day, and I love that her horizons are broadening, so I give her a hug and a kiss and send her out the door and hope for the best. For everyone. She waved goodbye, so I'm hopeful.

Connections

This morning while getting dressed Rachel said "My shirt is jello!" She was quite excited about it, but quickly moved on to something else, and I was left to try and figure out what she meant on my own. While things she says seem completely random, usually there is an explanation. If I can get her to keep talking about it long enough I can usually figure it out. For instance, the other day she said "my pants are frosting!" Obviously, her blue jeans are not made of frosting, but as she continued talking, I picked up on words like "Cookie Monster," "blue," and "cake," and I realized that she was referring to the fact that her jeans were blue, just like the Cookie Monster cake we had seen, and it made perfect sense. We don't eat jello that often, but usually when we do it's red, and since her shirt was red this morning, that was probably the connection. I can't be sure, however, because her thought processes aren't always that direct and easy to follow.

Her insults tend to be calling someone something that they aren't, for example, calling her brothers girls, or calling me a grandma. She loves her grandmas, and usually girls rule in her world, but she understands enough to know that she is mislabeling us, and since that is usually not a good thing, it's a way for her to express her displeasure. When she is unhappy about herself, she calls herself a boy. I am truly grateful that she has found a way to express her feelings. She may not be able to pinpoint exactly how she is feeling, but she is able to at least let us know when she is having a hard time. When she went through a phase of being totally uncommunicative/passive it nearly drove me crazy because I would try everything I could think of to make her happy, knowing full well that I could be having just the opposite effect on her, and I had no way of knowing.

She frequently assigns colors and animals or characters to people. The other day she was a blue princess and her brother was a green frog. I don't have any idea how she decides these things, but very seldom does she assign the same color or character to two people at the same time. If she's annoyed with someone they get the animals and colors she doesn't like as much. Since her favorite colors and characters change a lot, it's not always easy to tell if what she says is positive or negative, though. Frogs used to be yucky, but she really likes The Princess and the Frog now, so sometimes they're good.

On a completely different note, she was talking about her birthday (something she does almost constantly) and has made a fairly consistent request. She wants a new boyfriend. Typical twenty year old girl? She also has a guest list for her party. It includes Frodo, Anakin, and Data. I didn't realize how truly nerdy (or is it geeky?) our house is. Those guys are her favorite heroes. I think it's interesting that she chose Anakin over, say, Han Solo (my choice), but I think she is referring to the little boy Anakin. He really appeals to her. I'm not sure why Data is her favorite of the Star Trek actors, but I agree he's fun to watch. Growing up with all brothers has definitely influenced her. She can talk about Star Wars fairly readily, but doesn't even know who Mr. Darcy is (how completely sad is that?).

I am sincerely grateful that she is talking. Sometimes the constant stream of words coming out of her mouth make it difficult to concentrate on something I am trying to do, but it sure beats silence. Hands down.

life is good

 Fortunately, life has been great around here lately. Rachel has been talking and eating (her pants are even fitting again) and messing up her room. Unfortunately, I haven't bothered to write about it. Apparently when things are going well I just enjoy them, and when things aren't going so well I write about them. I am trying to change that and document the good times as well as the difficult ones.

A few days ago Rachel, her dad, and I had to go run some errands. She was in a good mood and enjoyed looking at things at the store and commenting (loudly) on a lot of them. One of the things she does frequently is comment about people. "Look, there's a boy. He's a cute boy." Sometimes she talks about clothes and colors, and sometimes she'll say things like "He date me" or "He marry me." That gets some looks occasionally. One thing she does often that is either super embarrassing or super funny (I choose to see it as funny, since I can't seem to get her to stop) is commenting on specific clothing items. She frequently says (again, loudly) "Look at that boy. He's wearing pants!" as if that is such a novel idea she's never even seen it before. I instinctively want to explain to everyone in the vicinity that yes, we do indeed wear clothes at our house, not just occasionally or frequently, but all the time! However, I think that would just make things worse, so I just smile and agree with her and move on. She makes me laugh.

Throughout this trip her dad had been teasing her and tickling her a bit. When we got home I was helping her take off her coat and hang it up and she leaned close to me and said with a very teenage-girl-conspiritorial-look "Mom, Dad's being weird." She had the cutest smile and was so happy, it just melted my heart. She is such a daddy's girl. Always has been. I love it when she is in a good mood and interacts with him.

When I get her up in the mornings I usually get comments from her lately. Mostly things like "it's not my turn" or "it's not my job" or "I can't do it" or "I'm not ready." The other day she didn't say anything until she got to the door of the bedroom. She then turned around and with a very serious expression said "We don't say 'pee.' It's (dis)gusting." Then she turned and walked out of the room. I wish so much I had been able to record that. It was the funniest thing she's done in a long time. Having been raised by a mother who had a dislike of anything crude, I very seldom use words like that (can't always say the same thing about my boys, but even they monitor their language fairly carefully since their mother also has a dislike of crude words), but I don't think I've ever had a conversation about it with Rachel. It must have come up at school, but it was just so random to hear first thing in the morning. I love having this awesome little girl in my life!

"soaking"

It's been an awesome summer. Rachel has been very interactive and happy, so we've just enjoyed her. She's eating and talking and playing in ways she hasn't for years, so I'm very grateful.

I love it when she learns new words. It's really difficult to teach new words to her because that requires that she is mentally on the same page as the person teaching her, and it's hard to get her there. Nouns are easiest because I can show her a picture, or the actual item. I can tell her what it is, and eventually she'll get it. Adverbs and adjectives are a bit harder. Frequently she picks up new words on her own. Sometimes she gets it right, and sometimes not so much.

The other day it was raining fairly hard and we were out in it. When we got back I said something about being "soaking wet." She really liked that, and used "soaking wet" a lot over the next little while. Then, when she had that down, she decided to expand her use of "soaking." When we were wiping off the table after dinner she said the table was "soaking dirty." Then, she was "soaking tired." Later, she was "soaking hungry." We have now added "soaking cold," "soaking hot," "soaking sure," "soaking small," and her brother is "soaking tall." There have been more, and I'm a little frustrated I can't remember them right now.  I haven't been able to get her to understand that "soaking" doesn't mean "very," and, to be perfectly honest, it's so cute I hesitate to have her change.

Well, it's "soaking late" and we're all "soaking tired" and her dad and brothers are going to hike to the top of a mountain tomorrow so I'm "soaking sure" that we'd best go to bed.

Milestones

The end of this school year has brought about a lot of changes and has kept us busier than usual, but there are milestones that should be documented. Rachel turned 20. Not only is she not my tiny girl anymore, she isn't even a teenager. I have never had a problem with my own birthdays. I keep wondering if on some future birthday I will get up, look in the mirror, see that I'm older, and become depressed. So far I've avoided that. However, I definitely had issues with Rachel's birthday this year. I don't seem to be able to wrap my head around the fact that she's 20 years old. It didn't bother me particularly when her older brothers turned 20, but maybe that's because they weren't living at home anymore. For some reason, when I look at her, 20 just seems so old.

When I really think about it, I think part of my problem is that as she gets older the chasm between her abilities and the abilities of other people her age widens. We knew when we adopted her that this would be the case (in fact, she is able to do so much more than we thought she would be able to). I don't think I've harbored any secret dreams that she would "get better" and live a "normal" life. Also, more and more often I am having to take her places she doesn't want to go or get someone to sit with her, because there is no one here to watch her and I can't leave her alone. I knew that this would happen as well, and I think I'm mentally prepared for it.

Another milestone is that this was her last year at her high school. This last year she spent part of her time at the high school and part of the time at a transition school that specializes in helping disabled children move into adulthood. They teach them life skills, job skills that may help them find employment, and offer recreational activities. Next fall she will go there full time. Last year Rachel could have gone through the graduation ceremony, but she wouldn't have enjoyed it, so we opted to not have her attend. This year has been a bit better, and her younger brother was graduating, so we decided to at least get a cap and gown and do pictures. I took her to the practice to see what she would do. She smiled all the way through it, so I decided to let her walk. She was right in front of her brother, and I think it went well. She was a little confused, but there were people there to help her and guide her. The only real problem she had was while walking up the stairs to the exit after the actual ceremony, her shoe came off, and her brother had to pull her off to the side and help her put it back on. She apparently was vocal about the fact that she didn't like the situation. I'm not sure what she said, but her brother was grateful to turn her over to me when I connected with them. There aren't many brothers who would be willing to help her out the way he does on a daily basis. I know he has learned a lot from her and loves her completely, but he has had to make a lot of sacrifices and put up with a fair number of embarrassing and uncomfortable situations. He does it with love and quiet loyalty, and I will be forever grateful for him. Lately he's been the one who stayed home with her the most, and while I will miss the convenience of him being here with her when he leaves home, I will miss, even more, his willingness to do whatever random thing I need him to do for me, his quirky sense of humor, and most of all the quiet strength and desire to serve others that he has developed. Rachel sometimes picks on him (verbally, since he is about a foot and a half taller than she is), but I know she is going to really miss him.

This started out to be a happy, upbeat, "look what awesome things are happening at our house" post. I guess it got derailed by the slightly sad/nostalgic thought that my children are growing up. I wouldn't ever want to hinder their progress, but I miss being the most important thing in their lives, the sticky hugs and kisses, and the sleepy "I love you, Mommy" when I tuck them in bed. I look at them and I can still see the children that they were underneath the amazingly awe inspiring people they have become, and realize I wouldn't change a thing.

Dark White

Rachel has been talking a lot just lately, which has been really fun. She just randomly talks, whether anyone is in the room with her or not. Most of her conversations have centered around colors. She assigns colors to people quite frequently. Today her older brother is purple and her sister is pink. Grandpa is dark green. Today she is dark white. I'm trying to figure out what color that actually is. I don't know if that's black or grey or beige or just white that is dirty. I asked her to show me "dark white" and she smiled and said "No, it's mine." So I'm left wondering.

We were headed out the door to go to the store and she said "It's my friend's brother's uncle's cousin." I was impressed that she was able to string the words together that well, even though I'm quite certain she doesn't understand relationships well enough to do it accurately. She frequently mislabels people. Sometimes she does it accidentally because she's not sure what the word means, and sometimes it's on purpose to tease or because she's angry. She knows that some titles go with some people, but I don't think she understands why they get that title. Sometimes she understands more than she lets on, though, or at least more than she can verbally express, so who knows?

She's staring out the window with a little mischievous smile on her face. I asked her what she was doing and she said she wants cake. A dark white cake. With sprinkles.

Sometimes I wish I could see inside her head so I could understand what she is talking about.

Socks

So much has happened in our lives just recently that it'll take a bit to catch up. I think I'll start with one of the most important items. Socks. Well, at least it's the issue that's plaguing me this particular morning. Rachel has a lot of issues with socks. She's never been able to figure out the heel part of the sock, and why it's different from the rest of the sock. Consequently, the heel of her sock frequently ends up on the top or side of her foot. I don't really like to micromanage her dressing if I can help it, so unless it looks like it'll be uncomfortable I don't fix it for her. I try to buy socks that don't have a distinct heel, or are soft enough that it's not a big deal if the heel isn't in the right place. If the socks are too stiff or thick, she won't pull them up far enough and there will be wadded up sock at the end of her feet, taking up too much space in her shoes and hurting her toes. If the socks are too soft and stretchy, she will pull them up too far and her toes end up being smooshed in her socks to the point that they hurt. Unfortunately, she never complains about either of these things, so I'm unaware until she takes her shoes off at night and I can sometimes see the results. On rare occasions she has complained that her foot hurt, but usually I can only guess when I see her feet at the end of the day.

Her socks needed to be replaced, so I checked out all the socks at the store and picked ones I thought would work well for her. They're too stretchy. She pulls them up so far her toes are cramped. Now that I know this I can at least check every day and see that they're on right, but it takes one more piece of independence from her, which I don't like. I guess it's time to go look at socks again. Hopefully I'll pick better next time.

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.

Dealing

We had a week of spring break during which Rachel and her brothers didn't have school, and then her youngest brother was very involved in a play, so we've been a bit busy around here. Rachel has definitely enjoyed the spring weather. When it's been warmer she has enjoyed wandering around the backyard and has liked seeing the flowers come up. We've had a lot of cold days also, however, which she hasn't liked as much. Snow in December is awesome. Snow in April, not so much. I definitely agree with her on that one.

I realized the other day that there are a few things we do in our house that may seem odd to someone else if they don't have the explanation that goes with them. In our main bathroom (the one that Rachel uses almost all the time) we don't put the toilet paper on the toilet paper holder, we just set it on the back of the toilet. When it is placed "properly" on the holder, it's so easy for it to go around and around that Rachel ends up with a lot more paper than she needs and she either tries to wind it back up, or she puts too much in the toilet, which can sometimes make a mess. We're not too lazy to put it where it goes, we're avoiding unpleasantness.

I don't ever put two hand towels in the bathroom, although there is room for them. Rachel always stands to the side of the towel bar instead of directly in front of it, then she pulls the towel toward her to dry her hands and face. For some unknown reason, if there are two towels she always wants to use the one the furthest away from her, so she has to pull even harder. Not only am I a little concerned that she's going to pull the thing off the wall, she usually ends up with both towels falling completely off the bar. The OCD part of her can't allow them to fall down, but she usually can't get them back up the way they are supposed to be, especially from the angle she is working from, so she stands in the bathroom trying to figure it out until I go fix it for her. I'm not sure what is "better" about the towel that is furthest from her, but it doesn't seem to matter what color it is, just that it's the hardest to reach. I've tried getting her to stand in front of it, but she won't do that, either.

If she's given the choice, Rachel will usually go into her bedroom when we have company, but she frequently listens to the conversation from her room. If anyone laughs, she will usually laugh too. Loudly. It sometimes sounds a little odd, and people who don't know her sometimes seem a little nervous about it (people who know her are delighted by it, and it usually makes them laugh again, which makes her laugh....). I guess if you've been reading Gothic romance/mysteries, and you don't know Rachel, it could be a little unnerving.

It seems that when I was thinking about this a couple of days ago I had more things in mind, but I don't seem to remember what they are now. I'm so used to the way things have developed around here, I don't notice that they're different from "normal," if there is such a thing as normal.

We tend to do things the way that works best for us. Everyone does. We all deal with something. I have a friend who has bottles of lotion all over her house because she obsessively washes her hands, so her hands get red and sore, even with all the lotion. My thought is, just don't wash your hands so much, but she can't seem to quit, so she uses lotion. It works for her. I love that we have the ability to find ways to deal with issues we face, so much so that I forget we even do them.

eating

This morning Rachel sat up when I went in her room, but her hair was completely covering her face. As long as her hair is, it is surprising that it usually stays back and off her face while she's sleeping. I carefully parted her hair and pulled it back out of the way and was surprised to see a smiling girl underneath it. She happily and quietly said "there's a baby on it" while she climbed out of bed and went into the bathroom. Only then did I notice the magazine sitting on her bed. It definitely wasn't there when I tucked her in bed, so I don't know if she got up and got it before she went to sleep, or if she woke up a bit early and got it, or if she was up and playing half the night. If I had to guess, I would guess that it wasn't this morning, because she would have gotten her hair out of her face. She didn't seem overly tired, so I doubt she was up too long, but I guess we'll see how exhausted she is this evening. The morning went just fine, with a little issue of her getting stuck in "readjusting" mode. She kept pulling up her pants for about 3-4 minutes, and for awhile she pushed her hair to one side, and then the other, and then back, over and over. Both times I stopped her, and then she moved on and was fine.

Last night was kind of fun. Daddy and the boys were all gone for different things, so it was just Rachel and I. We had a meeting to go to at her school, so I sat her down to eat a quick dinner before we left. She didn't really eat, but the reason she didn't eat was because she couldn't quit laughing. I have absolutely no idea what was so funny, and she wasn't giving me any clues, but she was laughing so hard she couldn't really chew or swallow or anything. I finally decided that she could always eat when we got home. At her school after a brief explanation they dismissed us to go on a tour or to talk to people about our specific, individual needs, and they had refreshments. They served chicken salad sandwiches, and so I got Rachel settled eating one. It was a little messy, so maybe she was afraid to put it down, but it's been a long time since I've seen her so focused on eating quickly. With all the issues we've had with eating just lately, it was awesome to see her really eat. I was able to get some important information, and had a great time talking with people who understood what our life is like. It was awesome to again reaffirm that we are not alone, and that there is help. Rachel is so much easier to care for than a lot of other disabled kids, but sometimes it's still hard. It's so great to be able to open up to people and know they understand me. I am truly surrounded by a lot of amazing people.

Ability and desire

This morning Rachel was a little groggy. It was hard to tell what kind of mood she was in, because I'm not sure she was completely awake. She got dressed okay, as long as I kept reminding her what she was doing. I usually don't put button-up shirts on her because she has a hard time getting them on, and figuring out which button to put in which button hole is usually beyond her, but for some reason I pulled one out today for her to wear (possibly because most of her shirts were downstairs in the laundry room, clean, but still all the way downstairs). Anyway, since she was just staring blankly at me I went ahead and put it on her and buttoned it up for her, something I won't usually do. Being a good mother, however, I realized that sending her to school unclothed was a bad idea, and doing it myself was the only way it was going to happen. Anyway, she made it out to the bus okay, and was at the very least not in a bad mood.

Last night we watched the championship basketball game on TV, and Rachel was not even remotely interested. We had worked on cleaning out the garage earlier, so we ended up eating while watching the game. The combination of her lack of interest in the game and the fact that we had taco salad for dinner, which is a little difficult for her to manage without a table in front of her, led me to leave her upstairs to eat at the table, while we were downstairs. Apparently that was a bad idea because when I came up to check on her and see what she was doing, she had left the kitchen. I found her in the bathroom, and got her to go back in the kitchen to finish her dinner. When I came up again she had once again left, without eating, and was back in her bedroom "looking" at books, in the dark, not having bothered to turn her light on. I decided I'd better stay with her until she had finished eating. I ended up feeding a lot of it to her because she simply wasn't eating on her own. She was happy, but was uninterested in feeding herself. She doesn't have any extra body fat on her that allows me to just decide she's not hungry and let her skip a meal, so I have to insist. She didn't mind eating as long as I fed her, she just wouldn't feed herself (she would get a bite halfway to her mouth and then just stare off into space. When I reminded her to eat it she would dump the bite back in her bowl and get another bite, which also never made it to her mouth).

By the time she had eaten a sufficient amount, it was time for her to get ready for bed, so I sent her in to put her books away and get her pajamas on. I tagged along, since she had been so easily distracted all evening, but I found other things to do in her room, so I wasn't "watching" her (she will frequently pretend to be incapable of doing things if I'm watching, to see if I'll do them for her). Out of the corner of my eye I saw her put her books back on the bookshelf, which was really awesome! She has a hard time getting the books turned the right direction, and then getting them to fit on the shelf with the other books there. She usually won't even try, and if she does try she generally has them at an angle that won't quite work so she pushes for a minute, and then gives up and leaves them on the floor or stacks them up on her desk. If there are too many books on the shelf, so there's not much space for additional books, it's hard for her, but it's even harder if she's removed so many that the books slide down and aren't upright anymore. I've tried just stacking them on the shelf so it's easier for her, but they won't all fit that way and she doesn't keep them in separate stacks. They just all end up shoved onto the shelf in a jumble, and then they get ruined. So, most of the time I help her by holding up the books already on the shelf, or if she's tired I'll just do it for her. But last night, although it took her a little while, she patiently kept at it until she had put all her books away. I want to think of this as a milestone that we've reached, but in all actuality she has done this quite a few times before, sometimes as isolated incidents and sometimes she's become quite good at it and done it consistently for a time, and then for some unknown reason lost the ability to do it. But I'm cautiously optimistic. It's not that putting her books away for her is a burden I'm unwilling to bear, it's that she is so much happier when she can do things herself, and it frustrates her when she just can't manage it.

I'm not sure why, in one evening, I had to help her do something she usually does on her own, but was able to watch while she accomplished something that she generally can't do. I guess it was desire. She was able to accomplish the things she wanted to do, but not the things that were uninteresting to her. Unfortunately, creating a desire in her to do something she doesn't want to do is difficult at best. And by difficult, I mean that I'm unable to do it about 95% of the time. But I am so very pleased that when she really wanted to do something, she was able to accomplish it. One of the most difficult things is to watch her struggle and get upset and cry because she can't quite get her body to do what she wants it to do. One of the best joys of my life is to see her light up and smile and say "I did it, Mommy!"

How to be happy...

A few years ago when Rachel was going through a particularly bad time, I would occasionally make her mad on purpose because it was the only time she would talk at all. I would just keep insisting she do something she didn't want to do (like look at a picture or color or snuggle with me) until she got fed up with it (usually a couple of minutes) and would tell me "no." After that initial episode of speaking, she would respond to one or two questions or comments before subsiding back into her quiet world. I don't have to work at it quite so hard now, but some days she is really hesitant to talk, or interact in any way. She likes to sit in her bedroom and stare out the window, and most of the things she says are unhappy. I've been wondering, though. I know when I am unhappy and want to be alone, that's good for a little while, but then I have to get out and do something to cheer myself up. Sometimes if I "act" like I'm happy, then I become happy. I read an article once that said the physical act of smiling can actually release chemicals that make you happy. I can't remember where I read it or even who wrote it so that might be totally untrue, but I do know that sometimes "going through the motions" can get you where you want to be.

My one real goal for my amazing daughter is that she be happy. I'm wondering if I can somehow facilitate that better than I have been. When she was little I was so busy trying to take care of her and respect her feelings that I didn't push it when she didn't want to be held. Her brother had no such qualms, and he taught her to hug. I wonder if I pushed her a little harder to interact in a happy way if she would become happier. I'm trying to figure out exactly what that means, or how to go about doing that. I can't really tell her to smile and pretend she's happy and see if that works, because even on the off chance she understood me, she probably wouldn't do it. She will almost always smile for a camera, though. I have a few ideas floating around in my head, now. I'll have to see if any of them work.....

Oh, and her knee is fine. When I bathed her the night it was bothering her, I could see the beginning of a small bruise to the side of her kneecap. She must have bumped it on something just before she came home, and the bruise just took awhile to show up. It's a small bruise and it doesn't seem to hurt anymore, it just needed some time to heal. My life would be so much easier if she could tell me these things so I don't have to worry if something really big is wrong, but that's not going to happen, so I guess I'll just deal with it.

Hug!!

This morning when I got Rachel up she started to climb out of bed and very sleepily said "going?" and stumbled into the bathroom. Can I just say how much I dislike daylight savings time? She was doing so much better getting up in the morning when it was actually light outside, and now we're back to dressing in the dark. It does not make me happy. She was doing much better by the time she left, and she actually waved to me again.

Yesterday she was not in a particularly good mood. She was talking to her brother and told him, for no apparent reason, "I don't like yellow!" He was trying to cheer her up and interact with her, so he said "Oh, well, what do you like?" She responded with "poop" and walked off into her room. I am again overcome with gratitude that she hasn't learned any swear words. That was definitely bad enough. Although her brother thought it was pretty hilarious (and yes, we all laughed. If you don't laugh you end up crying at some point).

Today when she came in the house after school she was really unhappy, and burst into tears on her way into her room. I went in to see what was wrong and if I could help her, and she gave me a hug. This was an honest to goodness bonafide hug. Those are VERY rare. Usually she gives what we call a "lean" which is a hug without arms. If you put her arms where they're supposed to go, she'll leave them there for a bit, and sometimes if you remind her to use her arms she will, but not usually. Today I got the real deal, and she slowly quit crying and calmed down. She said her knee hurt, so I took a look at it, but I couldn't see anything wrong. An hour or so later I needed to go to a friend's house just a few blocks away and decided a walk would be nice, but I noticed she was limping. Her right knee is really stiff. We walked very slowly, and by the time we got there it wasn't as pronounced. After sitting for an hour or so we walked back home, and her knee was even more stiff than on the way there. I still can't see anything wrong with it, but obviously something is bothering her. It doesn't seem to hurt when I touch it or move it, but it bothers her when she's walking. I don't know if I should put cold or heat on it or take her to the doctor. Sometimes the communication issues are so difficult to deal with. I wish she could just tell me what happened.

Grateful

This morning Rachel had a hard time staying focused on getting ready for school. She would have been very content to go back to bed or just sit down and look at books. I had to keep reminding her that she needed to get dressed. She wasn't unhappy, she just didn't really want to be up and moving around. I don't think anyone did. It was a rather quiet morning.

While we were visiting Grandma and Grandpa we watched a movie about Temple Grandin, who is a very successful woman who is also autistic. When Temple was four, her mother apparently was told that the reason her daughter was autistic was because at a vital point when Temple needed her, she wasn't there for her. Because of this they hadn't bonded properly, and that is what caused the autism. I can't imagine being told that. I remember attending a meeting with other parents of autistic children when Rachel was still a baby, and they all spoke of feeling guilty. They felt that they had in some way contributed to their child's disability, and that guilt haunted them. I can't imagine having someone add to that natural guilt response with an actual accusation. I am appalled that someone who is educated could actually have come up with that scenario as an answer to a disability. Since we adopted Rachel, I was free of guilt for many years. Since she had continued to make steady progress under our care, I felt sure that I had only enhanced her life. Until recently. The past 5 or 6 years, as her progress has come and gone, I have learned how to wonder if what I am doing contributes to her progress or her lack thereof. And now I do feel guilty a lot of the time. How grateful I am that I don't have a professional telling me that it's my fault.

Temple spoke of needing a hug, but being unable to accept a hug. She developed a "machine" that allows her to feel the comfort of being hugged. I am so grateful that Rachel allows us to hug her. She didn't when we first brought her home, but her older brother was fairly insistent that he get to hug her. Over time she began to accept the contact, and now she is calmed by hugs (most of the time). We are so fortunate, and so blessed, to be living at a time when disabilities are so much better understood, and to live in an area where so many people are not just willing, but anxious, to reach out to us.

As Rachel left today for school, I gave her a quick hug and kiss, and she gave me a smile and a wave goodbye. Life is good.

Home

Last Wednesday, Rachel, Daddy, and I went to visit Grandma and Grandpa (Daddy's parents). It's about a four hour drive, but she didn't say much of anything during the trip. She sits directly behind me, so it's hard for me to see her. Daddy tried to interact with her, but she was mostly content to stare out the window. We had a great time visiting. We went for drives and walks, shopped a bit, ate great food, watched a few movies, and mostly relaxed. She seemed fairly calm and happy most of the time. She only got upset one time, and it was fairly minor. I love that her Grandparents understand her and love her for the amazing person that she is. They are just fine with whatever affection she is able to give and whatever interaction she is up for, so it's just fun for all of us to be there. She doesn't really give hugs, but she does allow herself to be hugged most of the time, and she likes to be snuggled most of the time. She didn't really talk very much, but she seemed at peace and relatively happy. She didn't have any problem with her appetite while we were gone, which was really good. She slept in the same room as Daddy and I, and she's a super light sleeper. I tried to make sure she was asleep before we went to bed, but every night she would be awake when we went to bed. I was grateful that she slept in. She usually doesn't sleep in very well, but I guess she was tired enough and comfortable enough that she slept through quite a lot in the morning, usually at least until 9:00 or even later. I was glad because it's hard to have fun when you're tired, and the whole point of visiting Grandma and Grandpa is to have fun.

We came home on Sunday, and it was the day that we have cousins for dinner, so that was fun. Fortunately her sister-in law and her brothers fixed dinner, because we got home just as the cousins came (we had a flat tire on the way home, which set us back a bit). It's awesome to have amazing children!!! Rachel was okay with being in the middle of the hubbub, which was good. She seemed to enjoy the conversation around her, and she ate really well.

When I put her to bed last night I tucked her in and gave her a kiss and asked her if she was happy. She gave the tiniest little smile and said "my bed." Vacations are awesome. I totally love to visit family, especially. But I agree with Rachel, it's also nice to come home.

At least it's talking?

Two dialogues, approximately 15 minutes apart:

Dialogue Number One during which she never even looked at me:
Me: Hey, sweetie, how are you doing?
Rachel: (angrily) It's my birthday!
Me: Okay, now you need to put on your shirt, okay?
Rachel: It's not your birthday!
Me: You're right. It's not my birthday. Please put your shirt on.
Rachel: (tearfully) Is too, it's pink! (the shirt is green, but she's not looking at it, so I don't know what she's referring to for sure)
Me: Do you need some help?
Rachel: You're talking like a grandma! It's a spider!
Me: Okay. I'll be back in just a minute. Please get dressed.
Rachel: Don 't bite me!
Me: (after leaving for a minute and coming back) Thank you for putting your shirt on. Now shoes and socks, please.
Rachel: I'm not going.
Me: Sit down so you can put them on.
Rachel: (yelling) It's a birthday cake! It's not your birthday! It's my birthday!
Me: Pull your sock all the way up so it won't hurt your toes.
Rachel: (nearly crying) Is too, it's stupid! It's not pink! You bit me! I'm not a girl! I'm a boy! Rachel's a boy! I'm not going! It's a spider!
Me: Let's hurry and get these on. There, all done!
Rachel: No! It's not your birthday!


Dialogue Number Two, which she initiated (even coming into a different room to find me) and made complete eye contact:
Rachel: (sounding sad, but not angry) My lip hurts.
Me: Here, let me see.
Rachel: (pushing her bottom lip out) It hurts.
Me: Hmmm, I don't see anything wrong. Would you like something on it?
Rachel: Yes.
Me: There. Does that help? Do you want more?
Rachel: (smiling) Yes. (after a little pause) Thank you.
Me: You're welcome. Tell me if it keeps hurting, okay?
Rachel: (leaves to go look at a book).

We definitely have our ups and downs. They used to follow a trend of some sort, getting progressively better or worse over a period of time. Now it seems totally haphazard and I have absolutely no idea what to expect out of her at any given moment. After all that talking, she sat and looked out the window with a book on her lap, and didn't say anything for nearly an hour. She totally ignored everything I said or did. It's a little confusing, to say the least.

tantrums and smiles

This morning, before I even had a chance to say anything, Rachel said "No. I'm not going." She kept repeating herself, and kept sitting down on her bed whenever I wasn't looking, so I think maybe she was genuinely sleepy. She didn't stay up too late, but I have no way of knowing if she sleeps at night or not. She ate breakfast without complaint and seemed to be okay on her way out to the bus.

Yesterday when she came home from school she was in a horrible mood. She walked in the door and, with a very accusatory look, yelled "Is too, you bit me!" She continued to argue (with herself, since I refused to participate) that I, or someone, had bitten her, while she used the restroom, and then instead of coming back into the kitchen or living room she went in her room and slammed her door. I don't remember the last time she even shut her door, so it made quite a statement. I could hear her in there still yelling, then talking, then mumbling. Little angry comments. After about 45 minutes she quieted down and I opened her door. She was sitting on her bed with a magazine on her lap. She didn't respond when I spoke to her, but she looked pleasant enough. About a half hour later she was willing to show me her pictures. I have no idea what set her off, but I'm glad it passed. When she was younger and more prone to temper tantrums I would occasionally put her in her room to help her cool off. It wasn't a punishment, and it wasn't that I didn't want her near me when she was out of control, but if there were people around to "perform" for she would keep up the behavior longer. Also, it you're already in a bad mood almost anything anyone does is annoying, so she would continue to find things to be mad about. If she was alone, she would calm down much faster and was much less inclined to break things or try to hurt herself or someone else. I think it's interesting that she went in her room and shut her door when she was out of control. I'm hoping that maybe (?) she is learning how to take responsibility for her emotions a little bit? I truly hope so. Not that she's had that many emotions to take control of lately. I don't like seeing her out of control, but in many respects it beats the "nothing" that has been there recently.

Her brothers had another basketball game last night. It actually ended up being two one-hour games with one hour to rest in between. She laughed through the whole thing, which would probably have been  more appropriate if they had won. They played well, however, and I don't think either of them have any permanent damage to their bodies (which is a constant worry for me. Whatever they do, they do it intensely, without apparent concern for what could happen to them.) It was a good evening, and when I tucked Rachel in bed she looked very relaxed. I asked her if she was happy and she smiled, just a tiny little smile, and nodded her head. That's all I needed.

looking up!

I've been a bit lax in writing lately, because there hasn't been much to write. It seems like every day is a rerun of the previous day. Rachel only turns the lights on in her bedroom when I remind her to. She doesn't really play with anything, or even look at anything. She eats what I put in front of her if I prompt her, but needs to be reminded frequently. She dresses herself, but again she has to be reminded what she's doing. She is just as likely to take off the shirt she just put on as she is to put her shoes and socks on unless I physically remind her what the next step is (she hasn't been listening to verbal prompts very well). Frequently she washes her hands and then just touches the towel, instead of actually drying her hands. I noticed over the course of a few days that she went from turning the light off, to just touching the light switch, to motioning in the general direction of the light switch. I'm not sure how to stop this trend, because I don't know what is causing it. On the up side, however, this time I know she can/will come back. The first time she did this I thought it was permanent, and it lasted nearly a year. Since then she's had a lot of ups and downs, but I can weather them a lot better when I know it's not forever.

Yesterday when she came home from school she immediately went to her room. I went in a few minutes later, expecting to find her staring at nothing, but she had gotten a few magazines out to look at. I talked to her for a few minutes about pictures she was interested in. She had a picture of a mom and dad and a little girl. She pointed to the little girl and said "That's a girl. That's Rachel." Every time I checked on her she had more magazines and papers out, and she was usually willing to talk about them. When it was time to eat, she came right away and ate well. When I asked her if she wanted more she said "yes" and ate that quickly also. I tried to get her to talk to me, but she was in a hurry to get back to her bedroom and her magazines. Her brothers had a basketball game last night, and so we went to cheer them on, which was really fun. I'm not sure she really enjoyed it, but it was good for her to get out and see some people. When we got home it was a little late and she still needed to be bathed, and then there was this huge pile of magazines and papers spread all over her bed that had to be put away (which was awesome, not annoying), so she got to bed a little late. I am so glad that she is doing things again. I hope it will continue. I've missed her.

Cake

Rachel usually sits right up when I go in her room to get her up, but today she just pulled the blankets closer to her face. I said "It's time to get up, babe" and she responded with "No. You do it." She kept saying "not going" all while she was getting dressed. At some point her conversation turned to describing cakes. She does that a lot. She pictures birthday cakes in her head, and sometimes she'll describe them to me. The other day she was talking about someone's birthday cake that was blue with "angles" on it (triangles maybe?). Then she went on to describe a green cake. I asked her what color her cake was, and with a classic teenager "duh, mom" look on her face she said "pink!" Then she smiled a big smile and said "it has circles." This morning it didn't sound so much like a description of lots of different cakes, but just a conglomeration of every description she could come up with all run together in a confusing string of words. She mentioned all her usual favorite colors and shapes, but then stuck "bad guys" right in the middle of the description as if it fit somehow, and then went on to talk about "lights" on the cake (candles, probably). She was in a fairly happy mood by the time she left, and she even waved goodbye when she was on the bus.

Last Saturday when she was getting dressed she was pretty annoyed with her shirt. She was having a hard time getting it on properly and she reached down with her right hand and pulled on the left sleeve and stared at it for a second. Then she said "My shirt's name is...it's name is...my shirt's name is stupid!" I have tried for years to get her to name her stuffed animals or dolls, and she's never really done it before. "The dog's name is dog" or "I don't know" were the best answers I could usually get. Obviously she still doesn't quite get the concept, but it made me happy anyway.

Yesterday after school I was again unable to get her interested in anything. She ate dinner quickly and well, but she was uninterested in playing with or looking at anything. In the evening she went to her room and I watched and waited for a couple of minutes, but there was no sound and her room remained dark. I called to her to turn her light on and after a brief pause she turned it on, but when I checked on her a few minutes later she was just sitting on her bed. I eventually talked her into coming in the living room with me, and we listened to some music while I did some knitting. Everyone else had someplace they needed to be, so we were alone, but then her brother and his wife stopped by for awhile and she perked up a bit, so that was awesome. Apparently we need more people around here.

spiders and snakes

Rachel talked a lot this morning. Almost a constant stream. A lot of it was unintelligible, and most of it was angry, but at least there were words. She struggled a lot with getting dressed. She tried to put on her clothes before she had taken off her pajamas, and she put her arm through the neck of her shirt and got stuck for a bit, and then got mad at me for pulling her arm back out and yelled "why are you biting my arm?" and then burst into tears.  She talked a lot about spiders and snakes and apparently at some point a ghost also bit her arm (?). She was really jittery this morning as well.  After she got dressed and ate some breakfast she seemed a lot more calm. I hope her day gets better.

We had a fun weekend. We had a baby shower for Rachel's cousin on Saturday, so we got to see lots of family. Rachel didn't talk very much, but I think she enjoyed it a lot. Saturdays are hard because we usually have things to do that she can't help with or wouldn't enjoy. It used to be a great day that she could just relax and pick what she wanted to do. She would usually color or play with toys and puzzles, sometimes with people and sometimes by herself. Now she won't really do anything unless I insist, and then she gets angry. In the evenings when it's dark she will sometimes go to her room, which is fine, but she won't bother to turn her light on. She just goes in her room and sits on her bed in the dark. It's really hard to make someone play and have fun. And by "really hard" I mean "impossible." Lately she hasn't even been getting her books and magazines out to play with, and if I help her choose a toy to play with it just sits there next to her while she stares off at who knows what. So, anyway, having a baby shower to go to was perfect because it was fun, low key, and got her out of the house for awhile. I wonder if she's bored with all the options she has to play with, and maybe needs something new, but I have no idea what it would be. I've tried letting her pick something out at the store, but she usually won't even look at the toys. Sometimes she sees something she acts like she wants, but is uninterested when we get home.

Sunday she just seemed distant. She got a bit upset in church, which isn't unusual, but I can usually calm her down with a hug, and holding her hand seems to keep her calm and connected to me. She didn't want me to touch her, and she was getting to the point where I was concerned that she would start yelling. I pulled out a notebook and pen and let her color, which distracted her a bit, and then gave her half a piece of gum to chew on. That worked fairly well, as long as I didn't touch her too much. I usually carry a notebook just for her to color in, and the page I quickly opened to had been colored on before. There is just one spot where she had scribbled, almost to the point of going through the paper. I encouraged her to pick a different spot to color, but she just kept returning to the area where she had colored before. The pen was held at such an angle that it wasn't able to make a mark on the paper anyway, and she wasn't pressing hard enough to really do anything, so I guess it didn't matter. I recently found a picture of balloons she made a few years ago. Just some circles with lines drawn down from them for the strings, but it is one of my favorites. I wish she would draw again. She used to love it so much.

I'm fairly certain that all the abilities and knowledge and desires she used to have are still in there somewhere. Occasionally they show up again, sometimes just for an hour or two, sometimes longer. But then they're gone again, and I'm left with either a vacant look or anger.

"I don't want to go"

Rachel paused part way out of bed, looked at me, and said "I don't want to go." Then she waited to see if I would insist. It almost worked. She so seldom makes requests, it was really tempting to let her go back to bed, but I know she enjoys school and I've got enough things to do that staying home with me wouldn't be much fun. She seemed a bit unhappy most of the morning, but not angry. "It's not my birthday. I can't do it. I don't think so, it's not my clothes. I died." That last one always gets to me, but as I posted earlier, I don't think she understands the meaning of a lot of words, just that they're negative. When she was getting ready to eat breakfast she heard Daddy singing a song that involved color (I can't remember now what it was) and she leaned toward me and quietly said "no, it's green." It sounded like she heard him say something wrong and wanted to tell me the correct answer, but didn't want him to hear. She even smiled a little. Awesome.

So, I guess I'd better go get my running in for the day. I really like running after I get started (or sometimes after I'm finished). Some days I have a really hard time getting myself out the door, though. One of the motivating factors is that I feel very responsible to take care of my daughter for as long as I can, and I need to be healthy enough that I can do it well. (That sounds like I'm on my death bed. I'm really not.) So on days like today when I'm right there with Rachel's first comment, "I don't want to go," a sense of duty to her gets me going when I don't care so much what size jeans I wear or if my arms are getting flabby. After my exercising I get to do the laundry, tackle the pile of mending that is building up in my sewing room, clean the kitchen, and pay some bills. I don't really mind doing these things, they're just not that fun. Maybe I should have let Rachel stay home today and we could have played with clay and read books and danced to silly music. What was I thinking.

Relaxed

This morning Rachel climbed out of bed, looked at me with a slightly bemused expression, and said "where going?" I guess that makes sense after a 3 day weekend. She wasn't in a particularly good mood. Her conversation went something like "I'm not a girl. I'm not Rachel. Not Going. It's not for me. I wear stupid." Lately she's gotten a little better at getting dressed on her own, but today we were back to having me remind her to put on every single item of clothing. (a side rant: why is it that I buy her a shirt that fits, even a little loosely, I wash it in cold water, hang it to dry, she looses weight, and now it's so skin tight that I feel uncomfortable letting her wear it in public? Annoying!!!!) Anyway, we got her ready for school and she went out to the bus without any particular issues, but I really would have enjoyed a smile.

Her brother has been sick the last few days so we didn't do much yesterday, even though it was a day off. It was a relaxing day, which was probably good. I'm really hoping nobody else gets sick. When Rachel was a baby she got sick almost anytime anyone looked at her, and every time she got sick, she would have a seizure. That always triggered vomiting. When she would get to the point where she couldn't even keep water down we would end up in the emergency room. Eventually her immune system got stronger and now she doesn't get sick any more than anyone else does, her seizures are rare, and it's been a really long time since we've had to rush her to the doctor. I'm so grateful for her improved health. I used to keep her home from things I know she would have enjoyed, especially in the winter, just because I was afraid she would get sick. I don't have to worry about that anymore. Sometimes I just need to remind myself that we've overcome some things, and be grateful. If she gets sick, it will mean a few days of her missing school and being uncomfortable and needing to watch her a little closer for seizures. That's all.  I sincerely hope she doesn't get sick, but I'm grateful there's no need to enter crisis mode.

weight loss

As I have been doing the laundry the last few weeks, there have been several times when I have discovered some of Rachel's jeans with the button and the zipper done up. That worries me. Those jeans fit her quite well during the summer, but now she can apparently take them off without undoing them. I was in the bathroom with her the other day and noticed that she unzipped the zipper, but didn't undo the button. She even remembered to zip the zipper back up. Anyway, her little idiosyncrasies don't worry me, they generally just make me shake my head and smile, but her weight loss concerns me. Her eating habits seem to go through cycles. For awhile she will eat a lot of everything, regardless of what it is. Then, for no reason that I can see, she nearly refuses to eat and/or swallow her food. Usually we have something somewhere in the middle, but the extremes really concern me.

Last night we had homemade pizza twists for dinner, which is one of her favorites (when she will acknowledge a favorite, that is, which isn't often). We were eating downstairs and I had come upstairs for just a minute. I could hear Daddy talking to her, asking her if she was finished eating, if she liked it, and if she wanted more. I couldn't hear her responses, but then Daddy told her if she wanted more she should go upstairs and ask Mommy. I could hear her quickly coming up the stairs, and she handed me her plate. I smiled at her and waited for just a second, and she said "More pizza, please" (I LOVE it when she smiles and asks for things appropriately - her smile is cute, and I know I'm giving her what she wants instead of just guessing). I put more on her plate, and she waited patiently while I cut it up for her, then she carefully and happily carried it back downstairs to eat. I didn't even have to push her to drink her water. So maybe the weight loss will resolve itself. Hopefully she will take care of it on her own, because I really don't enjoy spending an hour every meal trying to get her to swallow a few more bites. Even though I know it is necessary, I still feel mean.

This morning she ate her breakfast without any problems or complaints, so I'll keep my fingers crossed.

"the cat ate it"

Rachel had a good morning today! I think it might have something to do with the fact that it is light outside when she gets up. Or not. Just a guess. She said "I'm not going. It's broken." as she got out of bed, but it was said with a lighter sound in her voice, not sad or angry. When we went into the bathroom to brush her hair she said "My hair is gone." I asked her where it was and she said "The cat ate it." Her younger brother is allergic to cats and so we have never had one, nor do I think that cats typically eat hair, so I've no idea where that came from, but it made me laugh (and she didn't get upset that I was laughing). I was brushing her teeth when Daddy said "The bus is here!" She said/yelled  (with a mouth full of toothpaste) "Not here!" I realize that all these comments sound negative, but that's just what she does lately for some reason. Her tone was more conversational than unhappy, and I absolutely love to hear her talk!

Yesterday afternoon I went in to see what she was doing and she looked up at me, a little teary, and said "You broke my heart! You hurt my feelings! Quit biting my finger!" I hugged her and got her to calm down, and then she seemed fine. No clue where all that came from, but after a bite of chocolate, a hug, and looking outside for a bit she was happy again. 

There is a group for teenagers who have special needs in our area. They meet every Thursday night for an hour and a half. Each special needs teenager is paired off with a teenager who is volunteering their time, and they sing songs and have fun activities. (Actually, the group is for people 12 and older, so it isn't just limited to teenagers, but I think most of the volunteer kids are 12-18, and then there are adults that run the program.) For a long time we've been thinking about taking Rachel, but in the past it has seemed like school was enough. She would come home tired and really wanting to have "quiet time." Lately I've been thinking that she would enjoy it, and I have an amazing friend who goes and helps every week, so last night Rachel attended for the first time. She loved it. Again, most of her responses were "negative," but she smiled and talked about "friends" last night as I put her to bed. I am so grateful for the people who volunteer their time to help make our lives a little happier. It's good for her to be involved with other people and get to do things in groups. Lots of people know Rachel from school, and I think they are disappointed when she doesn't respond to them in social settings. She just doesn't lately. Not even family members she's known and loved her whole life. I hope it doesn't hurt their feelings or keep them from trying to interact with her and others. It's just part of who she is right now. Hopefully she'll come out of it again and interact with people better, but I don't have the slightest idea of how to spur that on. In the meantime, I know that having people come up to her and talk to her really makes a difference in her life, whether she responds at the time or not. As I mentioned earlier she talked quite a bit about her friends last night as I was putting her to bed. She really does notice and enjoy the interactions.

It seems like we're on a bit of an upswing. I hope we can keep the momentum going! Happy is so, so, so much better than sad!

"It's not working"

This morning I got Rachel out of bed and sent her in to use the restroom. She was moving slowly, so I indicated to her that she should go. She paused in the doorway, turned, and with a very serious look on her face said "I can't. It's not working." Then she turned and walked down the hall. Later on she was all dressed except for her shoes and socks. I came in the room to see her standing, staring down at them on her floor. I said "Rachel?" She said "I can't find my shoes." I have seriously wondered if my boys had just "faked" looking for things before, but none of them have ever been quite that blatant. She just makes me smile.

We had family over last night, and Rachel would come out for a little while, and then go back in her room. It was dark, but she didn't turn her light on. She just sat there in the dark. She did sit next to her window, so maybe she could see some lights on or something outside. I just honestly wish I knew what was going on in her head. Years ago (she was 8) I had some pictures we would look at frequently, and talk about the stories the pictures were depicting. I would tell her the stories while pointing to the pictures, and then ask her questions. She could usually answer the "who is this?" questions and the "what is this?" questions, but only occasionally could she answer the "what are they doing?" questions. One day when I had asked a question that was a little difficult, she sat and stared at the picture for awhile and then looked up at me with a concerned look on her face and said "I can't talk it, Mommy." She knew what she wanted to say, she just couldn't verbalize it. When she was going through the worst of her lows about 5 or 6 years ago and got to the point that we thought we would lose her, I didn't think she was aware of anything going on around her. However, when she came back and started talking again it seemed to me that she was talking about things that had happened during that dark time. It makes me wonder how much goes on in her mind that she can't share. How much more would she be capable of if she could express herself better. On the one hand, I hate to think of an active and capable mind trapped in a body that keeps it from being able to express itself. On the other hand, it's comforting to think that if she is trapped in her mind at least she is able to entertain herself and have things to think about.

After 19 years of intense and intimate involvement with her, she is still an enigma. There is so much I don't know, and don't even know how to begin to figure it out. But as I watched her walk out to her bus this morning I was touched by the knowledge that she is perfect, just the way she is, and I wouldn't change a thing.

Crying

On Friday I needed to go to the school for a meeting to finalize my son's classes for next year. I decided to stop in at Rachel's class to say "hi." The minute she saw me she burst into tears. I sat next to her and calmed her, and then I left. She's spent a lot of the last couple of days crying for no apparent reason, so it wasn't really a surprise to me that this occurred. The thing is, every time this happens, it warms my heart. I realize that to the uninformed this doesn't make any sense and might even make me sound cruel. But there is a reason.

We adopted Rachel when she was 9 months old. Between the adoption and the autism (and other disabilities), it took her a long time to figure out the parent/child relationship. For quite awhile she didn't really care if I took care of her, or if I suddenly disappeared and someone else was there. Also, she had been neglected and didn't cry very often, because in her limited experience it didn't really do any good. One day, though, we were in a group of people in my neighbor's back yard and something occurred to make her unhappy. She looked around at everyone, and when she saw me she started crying. And I cried too, because this meant that she knew of all the people there, I was the one that would take care of her. She KNEW that if she cried, I would come and help her. I don't think I can adequately explain the feelings in my heart at that time. My heart just grew. So, while I don't ever like to see her cry, I'm so incredibly grateful that she knows that she's safe with me, and that I'll try to fix whatever is wrong. There is such a responsibility attached to the role of parenthood. It scares me to think that I might not live up to what is expected/required of me. I hope that somehow she knows that if I don't fix something it's not from a lack of effort or desire. And, unfortunately, there are lots of times when I can't fix what is making her unhappy. Every time she turns to me when she needs something or cries when she sees me, she's telling me she still trusts me and knows that I love her and will help her. Since our ability to communicate with each other is difficult at best, this is one way I can know that bond is still there.

drinking

This morning I gave Rachel her seizure medication, as I usually do. I pop the pill(s) in her mouth and hand her a glass of water and she does the rest. As I watched her I noticed, again, the way she drinks. She puts the cup to her mouth, but then her tongue usually goes underneath the cup and she pours the water into her mouth and swallows without really moving her tongue or her lips. I tried it once, just to see what it was like, and I can't do it. I don't know why she drinks that way, and she's certainly not telling me. Sometimes she will chug an entire glass of water, 8 or more ounces, without a pause of any kind. Once I tried to get her to keep her tongue in her mouth while she drank, but she couldn't figure out what I was trying to do and we both ended up with water on us and I decided it didn't really matter HOW she was drinking, just as long as she got the liquid in her, so I let it go as unimportant. And it is. Her little quirks just fascinate me.

Noises

Over the weekend Rachel and I had a few hours or so where the two of us were sitting in the living room alone. I was doing some reading and working on the computer, and she was sitting on the couch with a magazine in her lap looking out the window. She kept making sounds (actually it was the same sound, over and over again), probably 4-5 times every minute, that could have been words had she opened her mouth a little farther. She looked relatively calm and happy. Every once in awhile I would ask her what she said or try to talk to her, and she would look at me like I was interrupting something important she was doing, and then proceed to ignore me.

I was annoyed. And then I felt guilty for being annoyed. And then I cut myself some slack because, seriously, any noise that is repeated over and over again can be super annoying when you're trying to focus on something else. And then I felt sad because if she would just open her mouth and talk there was probably something really cool happening in her head, and maybe I could have shared it. I wanted to scream "enunciate, child!" (and I probably would have if I had the slightest hope it would have done any good). She was having fun in her own little universe, and I wasn't invited. I just got to listen to enough of it to know it was happening.

I choose to be an optimist (notice the word "choose." I'd really rather throw a temper tantrum, but I'm "mature" enough to know that would be worse than useless). So, I'm grateful to know there was something going on in her head, and that it was important enough to her that she didn't want to be interrupted. I'm grateful that her daydream, or whatever it was, was happy. I'm grateful that I was able to watch her experience it, since I couldn't share it with her.

It's truly amazing to me how a small noise can become such an emotional experience when the parent/child relationship is involved. If my furnace had been making the same noise, I would have just tuned it out.

I am completely and eternally grateful that this beautiful, amazing, emotional girl is such an integral part of my life.

Smile

This morning Rachel was really talkative again, and seemed to be in a fairly decent mood (considering that it was morning, anyway). She mostly talked about colors and clothes. Most of it was so quiet I couldn't really hear her, but at least it was happy, and she talked! She didn't have any difficulty getting dressed on her own, either. It was a great morning.

The thing I'm the happiest about, though, is so simple it could very easily be overlooked. Last night when I was tucking Rachel in bed I leaned over, kissed her on the cheek, and said "goodnight sweetheart, I love you." She looked at me, and made eye contact so I could tell she was really "there," and smiled the most beautiful smile ever. At me. Sometimes the simplest things are the best things.

Pain

When Rachel gets undressed at night the first thing she does is sit down to pull her shoes off. It was a little sad this morning to watch her sit down on her bed and keep touching her feet. I know she got a little confused and was trying to take off shoes that aren't there, but she didn't seem able to move past the mistake on her own. At dinner last night she kept picking up her food with her right hand and placing it on the spoon she held with her left hand, and then putting it in her mouth. She used to be such a meticulous eater and couldn't stand to have her hands get food on them, and she almost never spilled anything. Lately she's been eating completely with her hands or a combination of her hand and spoon. I'm not at all sure why. I got her to color in her coloring book the other day. Sort of, anyway. She colored in the book and traded colors of crayons when I asked her if she wanted another color. Mostly she moved her hand with the crayon in it while she stared off into space. Sometimes the crayon connected with the book, and sometimes it didn't.

This morning when she walked out the door to go to school she was talking about falling down and hurting and blood. I'm wondering if this is a memory or a dream or just something she was thinking about on her own. When her youngest brother was in elementary school he came home one day and his eye looked a little red and swollen. I asked him about it and he told me someone had accidentally hit him in the eye, but it was okay and it didn't hurt, it just itched a little, so I didn't worry about it. About a half hour later his eye looked even worse, and when I asked him to tell me again what happened and how long ago, he couldn't tell me much. I kept trying to get answers from him, because it was obviously more than just a small tap on the eyebrow, and it couldn't have happened earlier in the day since it was still getting worse. He kept trying to come up with a story that would make me happy, but he couldn't. When the other eye started turning red, I realized that it must be allergies. By the time we talked to the Doctor and got some medicine for him, both eyes were swollen shut and the whites of his eyes were all swollen, too. He looked like something from a horror movie. It was no wonder he couldn't explain to me what had happened to make his eye turn red. My initial insistence that something that would make his eye that red would have made enough of an impact that he would certainly remember, and that I wasn't going to get whoever hit him in trouble, I just wanted to know what happened, was totally off base. It was interesting to see him try and explain to me something that he didn't understand. I wonder if that is what Rachel is doing. She talks about blood a lot, and talks about falling down and things hurting. I wonder if she hurts somewhere and doesn't know why, or possibly can't even pinpoint where it hurts, so she's trying to come up with a scenario that would explain the pain. I know that when I've hurt myself badly, I dream about being hurt. She talks a lot about pain and blood in the morning. I don't know if it's a result of a dream or not being a morning person. I wish I could communicate with her better.

This morning I was going to go run my four miles, clean my kitchen and living room, and sort through some books. But I have a little bit of a headache that I'm hoping will go away. It's not bad enough that I can't function, but it hurts enough that I don't want to do anything that makes me move too much, so instead I've done a little reading and some thinking, sitting and looking out the window.

I really wonder if Rachel hurts all the time, and that's why she wants to just sit and doesn't engage in activities or with people like she used to. I don't know how to find the answer to that. I feel like all I can do is make up a story that might explain what the facts are, but I don't have the information I need to get it right.

knitting

This morning was a little difficult for Rachel. I left her in her room to get dressed and when I came back she was just standing there waiting for me to tell her what to do next. Usually when that happens she doesn't really need instruction, just a reminder to keep going. But today she kept trying to zip up her already zipped up pants and when I reminded her she needed to button them, she just touched the button and then kept pulling on the zipper. She finally got it done, and then the rest of the morning went smoothly. I was brushing her teeth and Daddy said "the bus is here!" She smiled (with the toothbrush in her mouth) and said "ah oh!" It was cute. I hope her day continues on the upswing.

This week I'm finishing (finally) a knitted afghan for my oldest son and his wife. It is a cable knit, and it's been really fun to do. It's relaxing for me to work on it when I'm feeling stressed or worried about Rachel. I was thinking that it's just a way for me to sit and still be productive while I'm resting, but today I realized that there is another element to it. It it logical, and it progresses logically. I know how far into the afghan I am and how far I have to go, and I don't suddenly find out that I have to start completely over again. I don't sit down to work on it and find out that the pattern has completely changed. When I make a mistake it's almost immediately obvious and usually really easy to fix. I can pick it up and put it down whenever I want. My mind really likes logic, and my heart really likes the tangible, constant progress of the process. So, I guess, it helps put me back together again when I'm struggling.

I had a friend offer to watch Rachel so we could have a break. Sadly, right now if I want a break all I have to do is walk in the other room. I know that when I go back to check on her she will most likely be in the exact same place and same position I left her in. There is about a 20% possibility that she will have gotten some magazines out and spread them around, but that's about it. I want a break from having a break from her, and I don't know how to make that happen.

Bare basic needs

Last night Rachel, Daddy, and I went to watch her brother play in a basketball game. I wasn't sure how she was going to feel about going, but she can't stay home alone, so she went with us. She grinned the whole time. I'm not sure she watched the game at all, but she smiled a lot. Which was great. And I've been thinking....

We all have desires and wants and needs. I have fortunately never been to the point where I had to lower my definition of what a "need" is to just what it would take to survive.  Today I "need" to go to the store to get some eggs, milk, and Rachel's medicine. Could I live without those things? Certainly, but they are neither extravagant nor unreasonable purchases. If I got to the point where I had to say water, beans, and a tent were my only needs, because that's all I could have and it's possible to live that way at least for awhile, I could do that. Bare basic needs.

There are so many things I hope for for my children, but if I could choose just one thing to give them, just the bare basic need, it would be that they be happy. I feel like that's kind of cheating, because that implies that they will have the things necessary to be happy. However, I know people who have lots of "things" who aren't happy. I know people who have what seems to be the perfect home and family who aren't happy. I also know people who appear to have nothing, but yet they are happy. So I guess it's an attitude that I'm hoping for. Whatever occupations they end up in, whatever they choose to do for hobbies, and wherever they choose to live, I hope that they can smile a lot. And I hope their smiles are genuine and beautiful, no matter what.

seizures

Rachel had a seizure in church yesterday. There is almost nothing that can make me feel more helpless (useless) than seeing her muscles contort unnaturally while I watch, unable to help in any substantial way. I understand why people try to keep a person having a seizure from swallowing their tongue or something, because at least it seems like you're doing something. I have had people who weren't familiar with seizures actually try to take over Rachel's care during a seizure because they felt like I wasn't doing what needed to be done. I make sure she can't choke on her own saliva and keep her from rubbing on anything in such a way that it causes an abrasion, and that's really all that can be done. Her lips have started to turn a little blue twice, and we took her to the emergency room where they did exactly what we had been doing. Fortunately this seizure was very mild. It really only involved her face and her right hand, and it was only for a few minutes, and then she slept on my shoulder for the rest of the time we were there. I brought her home and she slept for a few hours. After her nap she seemed to be fine. I'm glad it wasn't any worse than that.

A few years ago she was standing outside on our deck and I was a few feet away on the lawn. I heard her make a noise and saw her start to stumble. By the time I could run up the stairs she had fallen on the wood and bent her fingernail back about 1/8 of an inch below where it attaches to the skin. She skinned her arm. She is big enough now that I can't just pick her up, and it could hurt her if I were to restrict her movements too much. All I could do is slide under her and try to keep her body from rubbing against the rough wood of the deck, causing abrasions. It seemed to go on forever, but it was probably only about ten extremely long minutes. Then she slept.

The first grand mal seizure she ever had scared me. She had been having a lot of little seizures every day (so small that if you weren't looking at her and didn't know what to look for, you wouldn't even know she had one), but she had never had a long one before. We took her to the emergency room and they took care of her. I don't get scared anymore, and I no longer even call the doctor, but I do feel helpless. I'm grateful that she only has one or two a year, and they are seldom very bad. I'm grateful that she has good medical care to make sure that she is fine. I'm grateful that she never seems to have lasting effects from the seizures. I'm grateful that, for now at least, it's over.