The Daughter Chronicles

Wednesday, November 30, 2005

3:46 ante meridian

That is when Mia woke up this morning. And not I-woke-up-but-I-really-want-to-go-back-to-sleep-and-I-will-soon waking up, but Hi-everybody-I'm-ready-to-face-the-day-and-why-is-it-so-dark-out? waking up. Of course, I also could not get back to sleep. This is all part of the grand scheme of children. They don't want to kill us the manly way, with pistols at dawn. No. They will drive us to an early grave in other, more insidious ways. And then they will laugh over our shallow graves.

Monday, November 28, 2005

A bonanza of photographs

We got a roll of film developed over the weekend, and you get to share in the benefits! Aren't you lucky? I like to post pictures often, because at this age, kids change a lot, and it's interesting to see them grow. So we're off!

This first picture is just Mia hanging out on the sofa. She's sitting a lot better, even though she has support here. In the olden days she would just flop over. Now she actually sits there for a while.
 
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Norah here hangs out in her swing. We got it because we thought she would like it and maybe nap in it. She kind of digs it, but rarely falls asleep in it. Oh well. It still keeps her happy for some periods of time.
 
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No wonder Norah is a Demon Child. Her mommy is a Demon Mommy! Run from the demons!
 
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I love this picture. When Mia eats and Norah is sitting next to her, Norah just stares up at her in worshipful admiration. We're not quite sure why Mia eating is so fascinating, but it keeps Norah happy.
 
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Mia is performing some mischief here. Krys opened the drawer for her and she proceeded to pull out all the clothes and fling them around. Most parents would be a little peeved by their children getting into such mischief. We probably would be too, but it's a "normal" activity for a kid, so we encourage it. We've been happy with her progress in her gait trainer, because she can get around the house with only a little bit of help. When she walks around the house, we want to promote normal three-year-old activity, part of which includes flinging clothing. Parents of disabled children - adjusting your expectations is key!
 
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This is Norah in her gymini, which the kids' aunt bought for Mia a long while ago. Both kids have enjoyed it. Usually the pictures we take of them in it come out blurry, so I like this one.
 
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The disembodied arm feeds solid foods to Norah, and Norah expresses her disapproval. She has since seen the goodness of solid foods, which is nice.
 
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After a tough day out and about in her car seat, there's really nothing better than sacking out. Such a hard life for the baby!
 
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For the past ten days, Krys's grandmother has been visiting. She just left this morning. It was very nice to have her here for Thanksgiving, and of course she was ecstatic to see the kids. Mia was her usual cheery self around her, and Norah found her extremely fascinating. Whenever Josephine spoke, Norah was riveted on her. It was quite amusing. Here they are together.
 
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Norah checks out the high chair and thinks, "Hey, this is pretty cool. I can sure see a lot more from up here!"
 
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I ask you: who really needs the nap in this picture?
 
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This is Norah at five months, but the reason I posted it is because she's smiling. That's an event. Usually in pictures she's working the whole dazed and confused vibe. I think she was smiling here because she wasn't actually looking at the camera. Whatever. I'll take it.
 
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Finally, we have the ladies ready for Thanksgiving dinner. Another event - both kids are actually looking at the camera! Mia has less of an evil smile than in some other pictures (like in this one) and although Norah's not smiling, at least she's not crying. What a nice family I'm part of.
 
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I hope everyone enjoys the pictures. As usual, you shouldn't feel bad that your kids aren't as beautiful as mine. It's just the way it is!

Monday, November 21, 2005

What's the big deal?

Norah rolled over this weekend. Good times. She still has not figured out how to get her arm out from under her, and once she gets onto her stomach, she hasn't figured out that rolling back onto her back is pretty easy. If we put her on her stomach, she can roll onto her back easily enough, but if she rolls onto her stomach herself, she gets stuck. Oh, the vagaries of learning how to move! I'm pretty happy about it, because she is often bored and I keep telling her that if she moves around more often she won't be as bored. People tell me then I will be chasing her around, but you know - after having a kid who doesn't do that sort of thing, I'm looking forward to a kid who does. I'll be less bored then too.

Krys was very upset because she missed the big event. She was whining last week about working so much and missing their development, and then, on Saturday when Norah actually managed it, she was outside selling our car. So she missed it anyway. But my point is - so what? We put WAY too much emphasis on "the first time" kids do something. Norah rolled over - that's a good thing, but it's not like she won't ever do it again. I don't even remember when Mia rolled over, nor what her first word was, nor any of the other milestones kids have. Krys probably wrote them down somewhere, but it's not like I care all that much. It's nice that Norah is progressing, and maybe I'll feel differently when she starts walking, but it's not that big a deal. Am I a cold, heartless bastard? Could be.

Krys's baby book says that at 20 weeks, Norah should be "well established" with eating solid foods. Whoops! That's something we have to work on. If the book says so, it must be right! So far, she's not a fan. Wait until we hit her with vegetables! Bwah-ha-ha-ha!

Tuesday, November 15, 2005

The Demon Child and her Goofy Sidekick

We got our Christmas photographs taken on Sunday, and we tried to get pictures of the kids by themselves. It was after we got the family pictures, however, and they weren't exactly cooperative. Mia didn't want to smile, and she was having trouble sitting up straight. Norah kept trying to eat her dress. Finally we got them to both look at the camera. Mia gave the smile that she often does, when she pulls her lips back in a grimace that looks cute when it's in motion, but rather maniacal when it's captured on film. Norah just managed to look up. She smiles a lot, but definitely not on cue. So we got the picture below. I LOVE it. Krys was unimpressed, and we did not order this print. But now - I share it with you. Gaze in wonder at the Demon Child and Goofo, her baby Sidekick!
 
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Wednesday, November 09, 2005

Another reason why I will soon be insane

Kids like amazingly annoying things. That's a given. Mia likes this toy that is a Rube Goldberg-esque contraption that shoots balls out of a tube using air, and then the balls fall into a tray and wind their way down back into the machine. To activate it, Mia pushes a plunger on the machine. It's very cute. She got it a while ago, liked it for a while, then forgot about it. As kids do, she has re-discovered it. And has decided to use it drive Daddy insane.

You see, when the machine is activated, it plays music. Of course - God forbid anyone make a toy these days that doesn't play music. And, of course, it's a carnival-esque type of music. And, of course, it plays "Rockin' Robin." And, of course, Mia hits the damned plunger over and over again. "Rockin' Robin" over and over again. Like a clown was playing it on one of those little organs with the monkey. She does this to drive me insane, of that I am convinced. That little demon. She is pure evil.

Tuesday, November 08, 2005

Little things

When you're raising a disabled┬╣ child, you expect the big things. On a macro level, I understand that Mia can't walk, can't stand, can't really sit all that well (although she's doing better), can't talk beyond a few words, and has, well, issues. I understand all that and have learned to deal with it. I don't like it, but what the hell am I going to do about that? The interesting thing about raising a kid with disabilities is that there are so many little things that you don't anticipate about their upbringing. Examples:

1. If Mia throws up, we have to take her immediately to the emergency room. A bit severe, say you? Well, maybe, but the reason we have to do that is because of her shunt. She had a shunt in her head that drains the fluid around her brain into her abdomen. If this shunt gets screwed up, it may cause her to vomit. Therefore, we can never be sure and have to get her to the hospital lickety-split. Now, she has only vomited once since she got out of the hospital, so it's not like it's a common occurrence, but on that occasion, we took her to the hospital. It turned out it was just a childhood bug, but still - it's something we always have to be careful about. It's just something you never consider when you have an "abled" child - when Norah was puking, we just rode it out (and it turned out in that instance it was totally my fault).

2. Going along with the lack of communication and the sickness, Mia can't really tell us when she feels bad or what feels bad. It's frustrating. All she can do is cry. Now, not many three-year-olds can diagnose their illnesses, but Mia doesn't even say "Ow" and point to, let's say, her stomach. This makes treating her a hit-and-miss proposition. She's been cranky for a few days, and we're not sure if she's sick (she has lots of snot, but no other symptoms) or if she's just being a three-year-old.

3. Interaction with other kids is kind of strange. A boy at her school adores her (well, they all do, but he really adores her) and he's always running over to her in the morning and saying hi and petting her head and being a boy. He wants her to give him five, so he holds out his hand near her left arm. When she doesn't respond, he looks very puzzled and tiny bit upset. I'm not sure what to tell him, so his grandfather (who doesn't know what happened to Mia, but can figure some things out) and I subtly move him to her right side, and she happily slaps his hand. Just a small thing, really, but it points out what she is going to deal with throughout her life.

4. We have to be careful that she doesn't get dehydrated. It's not as big a deal now that the weather is better, but it's still a concern. She can't drink from a cup because full cups are too heavy for her to lift with one hand, even now when she's older. So she drinks juice from a straw, which she digs, and she still gets a bottle at night with milk in it, because drinking milk from a straw is a dicey situation. As "normal" kids get older, I imagine this becomes less of a concern - give them a sippy cup and they go to town. With Mia, we have to watch out for her.

These are just some small things that bring home how different she is and how much she's going to have to overcome. When she's getting therapy and working hard, you tend to think if she learns how to walk (with the gait trainer, admittedly, but at least she'd be able to get around) and how to talk, her problems might be almost gone. But there is so much we take for granted that it's humbling to think about all the things she can do and how much effort it takes.

┬╣ Or whatever the politically correct term is these days. "Physically challenged," maybe? Well, Mia is both physically and mentally challenged, and that's a mouthful. "Special"? Boy, that sounds stupid. She's disabled. She was able, and "dis" means the antonym of that.

Wednesday, November 02, 2005

Norah's diabolical plot

I have briefly mentioned Norah's weird sleep patterns, but I am now convinced it's a plot. An evil, diabolical plot! A plot unlike any the world has ever seen!!!!

Okay, so maybe a four-month-old cannot plot like the Illuminati, but I still say she's thinking about it. I have been trying to get her on a sleep pattern, because it's good for kids to be on a schedule. She sleeps fine through the night, which is nice, but during the day, it's a struggle. Let's look at her average day:

7 a.m. She wakes up. She smiles a lot because the day is beginning and she can torment her poor father.
9 a.m. Daddy takes Mia to school. Norah falls asleep in the car.
9.15 a.m. Daddy arrives at school. One boy is obsessed with Norah. He runs to her car seat, saying "Baby, baby" over and over. It's cute and weird at the same time! She usually wakes up the instant the car stops.
9.30 a.m. We arrive back home. She has fallen asleep again. Occasionally I can move her to the crib for a morning nap, but not always.
9.30, 10 a.m.-11, 11.30 a.m. Periodic napping. Sometimes it's 45 minutes, sometimes it's 30 minutes, sometimes it's a hour. It depends on how evil she's feeling.
11.30 a.m. Daddy goes to pick Mia up at school. Norah falls asleep in the car.
12 p.m. Daddy returns home. Norah is usually awake. I feed Mia for as long as 20 minutes, then put her down for her nap. This is when the fun really begins.
1 p.m. Norah gets a bottle. She falls completely asleep in my arms. The instant I begin to transfer her to the crib, she wakes up. I put her in the crib anyway. This is what is known as the "first attempt." I know it is futile. She knows it is futile. My cat knows it is futile. It's all part of the magical game we play. She spends a few minutes in the crib sucking on her pacifier before I hear the familiar sounds of babbling, which will, if left unchecked, quickly become screaming. A good 60% of the time, "the first attempt" fails because of the little present she leaves in her pants for me. Sigh. I go fetch her.
1.30-2.30 p.m. Norah and I hang out in the living room. As I type this, it's what we are doing. She lies in her gymini playing with the hanging toys, attempting to roll (she can get onto her side, but can't quite get over), and smiles at Daddy as she dreams up new torments for him. Usually, if I focus all my attention on her for the entire time she's out here, she's fine. I'm chatting with her as I type this, because I'm multi-tasking!
2.30-3 p.m. The "second attempt." Usually by now she's cranky because she's
a) wet;
b) tired;
c) both;
d) possessed by an even more evil demon than the one that usually inhabits her tiny frame.
So I change her and feed her again. Sometimes she falls asleep in my arms, sometimes she just fakes it. It doesn't matter - the instant I begin to transfer her to the crib, she wakes up. Usually I don't even put her in the crib. I break out the big guns - the swing.
3-3.45 p.m. The swing. She hasn't warmed up to the swing as much as Mia did, but she's still young. I put her in it and fire up a Baby Einstein DVD. She has just discovered these, and she likes them. So into the swing she goes. Some days she soothes her, some days it pisses her off. It's all part of the pageant! If it pisses her off, I take her out.
3.45-4 p.m. Exhausted, the child falls asleep. This is the wonderful "third attempt," and it usually works. Of course, since she spent so many hours fighting sleep, she's ready for some hard-core sleeping action, and usually I start, around 5.30, trying to wake her up. Yes, it's an ironic reversal! I turn off the noise machine and fan and leave the door open. I play music in the living room while I feed Mia. I turn the light on. Nothing works - she sleeps the sleep of the just! This usually ends when I flick lit cigarette butts at her head. Oh, calm down - I'm just kidding! I'm just ripping off Keanu Reeves in Parenthood. I do have to wake her up, though, and of course, that doesn't make her happy. She gets over it, though, because now Mommy's home! Yay, Mommy!

This is, of course, a very loose schedule. For instance, today Mia did not go to school, so Norah didn't get a chance to ride in the car until much later in the morning and for not as long. Therefore, she only slept for about 15 minutes before I put Mia down for a nap. The "first attempt" was still a failure, but the "second attempt" worked because she was so tired (I took a break in the middle of this post to put her down). The present in her pants was, as usual, all too present. It's not even 2.30 now, so maybe she'll wake up at a reasonable time. Her plot seems to have worked, however. I'm actualy dictating this to one of my attendents here at the home, because I'm currently strapped down after attempting to take out the nurse with a licked-clean popsicle stick. So whatever Norah was plotting, she succeeded. Daddy is so proud of her accomplishments!