Sunday, April 30, 2006

"Blogging Against Disablism"---Crippled Communication

[Ed. note: Today has been designated "Blogging Against Disablism Day", and I have joined the bandwagon. However, I believe that the idea came from the UK, and they tend to say things a little differently across the pond. "Disablism" and "Disability" can be used interchangeably, it seems. I can't find a definition for it. Check out Diary of a Goldfish for more info.]



Mary walks from her van to the front doors of the department store, pushing her 4-year-old son in his wheelchair. She has to buy him an Easter outfit, but he's hard to buy for, so she may have to look for a while to find something that fits him just right. Thankfully, she has the whole day to look--just her and him, enjoying an almost carefree day. They only have to accomplish this one thing, and then she's going to surprise him with a shake at McDonald's. He can't eat anything else, but he loves this little treat in spite of that.

She quickly realizes that she's not the only one shopping for an Easter outfit today. The store seems mobbed. Filled with Mothers and Fathers, strollers with toddlers, sulking teenagers. Her heart sinks. She thought she was doing this before anyone else would want to. She hates taking him to places where there are crowds. Besides, it's not the weekend! Oh, but it's a school holiday. She wished she'd remembered that ahead of time.

The man ahead of her at the front door was kind enough to hold it open for her. Perhaps today won't be as irritating as she imagines. But her optimism is crushed just as she arrives in the children's department.

The stares.

So many of them. Little children gawking and not even blinking. She quickly tries to delve into a rack of clothes, being careful to point his chair to where there are less people, less staring. It's only a matter of time before she hears it:

"Mommy? What's wrong with that boy?"

"Don't stare Johnnie, it's not polite...."

But he continues to stare, because his mother is too preoccupied to do anything about it. Mary decides it's best to move on to another rack. Maybe near the back? Hmmmm, they seem to have some nice dresses there.....maybe I'll go look at them until they leave.

And they do leave. But they are replaced by yet more hurried mothers with impolite children. She can't get away from it, and yet she's upset with herself for not realizing that this happens and she probably should've learned from last year that she shouldn't take him out with her. She just can't handle the staring, the comments, the whispers and guarded glances.

He's not a freak! She wants to yell. He's a wonderful little boy with feelings just like you! But she's knows it's no use. They can't see past his contorted form and seemingly vacant eyes. SHE knows different, but how could they understand?

She didn't even find him something before it happened. The straw that broke the camel's back.

A woman, perhaps in her mid-twenties, notices her wheelbound son and decides to come over to her. This doesn't happen to Mary very often, but she panics everytime it does. What are they going to say? Do I know her from somewhere? Oh, I hope I know her and she just wants to talk about high school or something!

"Hi! I was just noticing your little boy. He's so cute! What's his name?"

Mary sees right through the smokescreen, but plays along despite her gritted teeth and plastic smile. "His name is Justin. He's four."

"OH! I have a son who's four! He's home with his Daddy today, though. I don't mean to pry, but I was wondering why Justin's in a wheelchair?" the woman says with a smile. She bends down to smile at Justin at his level. And then looks up to Mary for the answer.

Mary, by this time, is aghast at the woman's rudeness. Why should I tell you, a complete stranger, anything? Do you really want me to tell you? How long do you have, lady? His medical history is long and complicated, and a short answer is hard to come by. So she comes up with something:

"There's a bunch of reasons, but mainly CP. Ummm, I have to go now. Nice, um, meeting you."

She turns his chair quickly in the opposite direction, not looking back to see the woman wave and say goodbye to her child.

Mary quickly decides that taking Justin out today was a big mistake. She promptly leaves the store and loads him up. Instead of going to McDonalds and letting him see all the bright colors, she resigns to going through the drive-thru and then straight home.

She'll have to get that outfit another day. By herself.


Even though this story is fictional, it is based on actual, everyday occurances. Here, in the U.S., I find it is especially disturbing. Mainly because we have the knowledge, the ability, and the wherewithal to change it.

The problem is communication. I think our country has done a fairly good job at making concessions for those who have disabilities in general. There are wheelchair ramps and elevators and large bathroom stalls everywhere. Social services may still be lacking in some areas, but not all, and the common people can do something to make that better through law. But it's the lack of communication---the one thing that no President, dictator, or judge can alter in spite of all their power---THIS is what needs to change.

Dialogue. We need to have dialogue. Simple, respectful interchanges between everyday people. People who aren't ashamed or stressed out by the disabling condition they live with. People who are willing to train their children (and themselves) that people who look or act different are not circus side shows. With these type changes, a scene like described earlier would be all-but-nonexistant.

Doctors may have to follow privacy laws, but private citizens don't. Why is it so hard for us to discuss these things? It's not as if we as humans could change our situation. I could no more keep Michaela from having an abnormal brain as you could keep yourself from having a normal one. So why should I mind if you are curious as to why she acts that way?

A lot of times curiosity is spurned by an insecurity about something. People don't yet feel comfortable with others who act or look different than themselves. But this will never change until those who live with the disability can feel comfortable with their own situation. Once that happens, we can then begin to knock down the walls of silence and indifference. We can begin to realize that abnormal is normal in humanity, and that it's not something to be ashamed of or ignorant about.

Once we, as a society, are not shy about what makes us different and discuss those things as if they were normal, then curiosity will start to subside. More of the general public will be educated. They will not need to ask. They will not be afraid of that gentleman who's drooling in his wheelchair. They will say hello to him as he passes by instead of just gawking at him. Or trying to be "polite" by ignoring him. Since when is ignoring people polite? Yes, people don't like to be stared at, but they don't like to be treated as a leper, either.

It's a two-way street, this communication I'm talking about. And it's the major reason why disability is such a stigma in our society. We need to initiate it--those of us dealing with handicaps, and those of us who aren't. But I dare say that the ones who are, carry the heavier burden. We are the ones who have to let others know that we're OK talking about it. And if we're not--then we need to comes to terms with our situation. And realize that almost everyone is touched by disability.

It's all part of being human. But lack of casual dialogue cripples our fight to mainstream those with disabilities. Pun intended.


Alternate Scenario:

Mary walks from her van to the front doors of the department store, pushing her 4-year-old son in his wheelchair. She has to buy him an Easter outfit, but he's hard to buy for, so she may have to look for a while to find something that fits him just right. Thankfully, she has the whole day to look--just her and him, enjoying an almost carefree day. They only have to accomplish this one thing, and then she's going to surprise him with a shake at McDonald's. He can't eat anything else, but he loves this little treat in spite of that.

She quickly realizes that she's not the only one shopping for an Easter outfit today. The store seems mobbed. Filled with Mothers and Fathers, strollers with toddlers, sulking teenagers. Her heart sinks. She thought she was doing this before anyone else would want to. She would've brought his big-kid stroller instead; if she knew there would be a crowd. The wheelchair can be difficult to maneuver. Oh well. Must be a day off from school today.

She beelines for the children's department, hoping to find just the right outfit. One rack catches her eye, and as she pushes the chair in that direction, she notices something:

The stares.

So many of them. Little children gawking and not even blinking. She quickly tries to delve into a rack of clothes, deciding to point his chair to where there are less people, less staring. It's only a matter of time before she hears it:

"Mommy? What's wrong with that boy?"

His mother, absorbed in her search, stops and bends down to see what her son is talking about. "Wha? Oh! Johnnie, lets go say hi. That little boy looks like he's your age."

The mother and her child come closer and all-but-ignore Mary, smiling at her, but choosing instead to focus on her son and say a few words. After their little interchange, the mother smiles at her again and tells her that they better go and get their shopping done quickly. As they leave, the mother tells her son to wave and say good-bye to Mary's, which he dutifully does while skipping down the aisle.

Unfortunately, Mary can't seem to find something that catches her eye. "Oh, well", she thinks. "I have all day to find something anyway." As she turns to leave, she notices yet another person looking at her son. This time it's a woman and not a child. Mary pretends not to notice the woman and continues on her merry way. However, the woman stops considering the garment on the rack and heads in Mary's direction.

At first Mary wonders, "Do I know her? Did we go to high school together or something?" But soon realizes that, no, this woman is a complete stranger. Mary stops, and looks around her to see if she dropped something, prompting the woman to come and alert her. But she hasn't dropped anything as far as she can tell.

"Hi! I was just noticing your little boy. He's so cute! What's his name?"

Mary returns the woman's warm smile."His name is Justin. He just turned four last week. Didn't you sweetie?" Instead of waiting for a reply that will never come, she turns her attention to the woman. "Do you have any children?"

"Yes! I have a son who's four! He's home with his Daddy today, though. I don't mean to pry, but I was wondering why Justin's in a wheelchair?" the woman says with a smile. She bends down to smile at Justin at his level. And then looks up to Mary for the answer.

Mary, contemplates how to best answer this question without taking up too much of her time. His medical history is long and complicated, and a short answer is hard to come by. So she comes up with something:

"There's a bunch of different reasons, but mainly Cerebral Palsy. He also deals with spasticity, so he can't move himself very well."

"Wow. I've never heard of that. Is he in pain?"

"Sometimes. But I think today is a good day. Right, Justin? CP keeps his nerves from sending the right signals to make his muscles move. And spasticity keeps his muscles very tight and unable to relax. Right now, he's on a medication that helps him with that, so he's having some really good days and moving more."

"That's really great! I'm very glad to meet you, Justin. It looks like Mommy's taking great care of you. I'm gonna go now, but you have a fun day with your Mom." The stranger gives him a big smile and a wave. She thanks Mary for sharing her time and information before she heads to another department.

Mary heads out too. But she figures it's getting close to lunchtime, and a McDonald's shake is waiting for them--with Justin's name on it.


Communication--"Don't leave home without [being able to handle] it"

(It's your "Visa" to an easier day!)

Saturday, April 29, 2006

It Was The Ears, I Tell Ya

Thank God for "Blue's Clues".

I'm not talking about the show (we don't watch TV), but the computer game I'm forever grateful for. It is Michaela's favorite. Her all-time favorite.

And I'm not just talking about A game. We're talking numerous games. Perhaps 6 in all.

She's crazy about them.

She's also been playing them for almost 7 years now.

It doesn't really bother me, but I just can't believe she still likes them. Talk about a return on your money, eh? $10-$15 for 7 years of simple satisfaction.

If only we could get that kind of return out of the computer.....


She's not doing the greatest lately. Not bad. Just not great. She's still talking and eating, so that's really good. But she's drooling a lot too. Drooling is the pits. There's nothing worse than getting a hug and a wet willy at the same time.

But she's playing her Blue's Clues. At least, she's trying to play. Her arms are giving her trouble, so managing the mouse and the left click button can be a hassle for her. It's times like this where I think she gets really frustrated. She soooo wants to move that cursor to that spot, but she can't get it to move. So she'll give up on the game for awhile, but almost always goes back, just to see if that stinkin' cursor will cooperate this time.

Well, today she had given up and walked away from it (she NEVER turns it off). But I was sick of hearing the same ditty playing in an endless loop. So I decided to turn it off. I figured I could just start it up again later if she wanted it.
The particular game she was playing is called "Blue Takes You To School". It's her new fav, and I think I know why: It has a "rabbit table". This is where the "classroom pet" needs to be taken care of, and you get to give it water and food and brush it and so on. It's really cute.

But there's a twist. The game has some kind of internal timer that dictates how often these things need to be done for the rabbit. The longer you ignore it, the "sadder" it gets, and the more intervention it needs.

Michaela doesn't tend to neglect the rabbit for very long. She's often inundating it with carrots and water and lots of brushing, to the point where Periwinkle the cat has to tell her to quit it. The rabbit's gonna explode from too many carrots!! (Just kidding) But you get my point.

So when I went to turn it off, I was pretty astonished to see that the rabbit was at an all time low on the sadness scale.

I'd never seen it that bad. Half way, yes. But never almost dead. The thing looked pitiful. Ears down, not hopping, cage a mess. Poor thing.

So I did what any decent human being would've done:

I fed him, watered him, changed his paper, brushed him, and played with him.

And before long, he was his happy rabbit self. Bouncy and playful. I had successfully rescued Giggles the rabbit from immediate danger. It was a very cool feeling to see him all normal and stuff.

Until I realized that I had just rescued a computerized rabbit.

And a cartoon one at that. All I had to do was turn the thing off and Giggles wouldn't have known the difference. It's not like it's REAL or anything, Kell!!

(Please don't tell P.E.T.A.! They'll try to recruit me!)

Thursday, April 27, 2006

Funnish Type Things


I thought I would share some fun stuff that I have stumbled upon here in the vast universe known as the "internet". Every now and again, I've seen others post some things on their sites that they found especially helpful in being distracting. Well, I've been sidetracked a time or two, and fortunately for YOU, I was thinking clear enough to save the URLs for some of those interesting places. Places that make you wanna say, "cool beans, man" (that is, if you tend to speak 80s, as I often do).


Not Just Your Average Internet Games:
~Chinese Checkers it ain't, but it's still very addicting--like teriyaki steak on a stick kind of addicting....
~I love trivia. I used to think I was good at it. Now I know I STINK.
~Now here's an oldie but goody! Online Etch-A-Sketch!
~You find it online, but you play on your time. The Qfold puzzle--print it out and give it a whirl!
~The best web crossword game I've seen yet--very user friendly.
~My favorite card game--now I can play by myself whenever I want.

Picture-ish Stuff:
~This is why I don't miss living in the Northeast. Reason #1 (scroll down) and Reason #2.
~If you think drugs are bad for YOU, then you should see what they do to THEM
~OK, there's more to do on this site than look at pics, but it's the pics that are the attraction--you'll never think I have a lot of kids again.

Because My Website is Kid Friendly:
~Would you play it on the 'net? Try it! Try it! You'll like I bet!
~Who is Daniel Cook? This is Daniel Cook.
~One of my favorite authors growing up--Shel Silverstein's site.
~Her books are great, but that spelling, "Beatrix", kinda weirds me out....

I Aced Anatomy, And You Can Too:
~Because it's way more fun to say "please rub my sternocleidomastoid" than "please massage my neck"--dontcha think?
~And you really should know where your duodenum is---you just never know when it'll need a good cleaning.
~And although being immortal is not an earthly endeavor, you sure can look like it, if you want.

The Internet Knows It's Weaknesses and Strong Points:
~I hate giving out personal information (can't you tell?). Here's a trick that'll keep spam from gracing your dinner plate, er, your email box....
~The need for speed is all-encompassing. Find out if you've got what it takes....
~Thank God the internet loves cellphones. Because without this registry, telemarketers would too--on your dime!

Even Big Kids Need Toys:
~No pics, just words, but a billboard nonetheless.
~Never seen your name in print? Now you can. At least it looks like print (but it's just pixels-shhhh)
~You are not as good at parking your car as you thought. Don't let your teenagers drive until they've mastered this, PLEASE.
~I haven't tried this, but I really really really want to......not on my site of course. Maybe we can play this game at your place?
~"Mousetrap" for big kids. You wanna turn it off so bad, but it's way too cool to quit early.

My Kinda Funnish Stuff:
~Shakespeare rocks. 'Nuff said.
~You can't have 5 kids and not like saving a few pennies now and then--especially in the kitchen.
~You can't have 5 kids and not almost blow up your kitchen. Sites like this are very helpful.
~I hate the flu. I hate the flu shot. I hate the flu. I hate the flu shot. I can't make up my mind.
~No, you'll never know when you die exactly. Cuz you'll be dead. But it's fun to guess.


I can just hear it now....

"Deeeeeeeeaaaaaaaaaar! Aren't you coming to bed?"

Don't blame me--you clicked!

Monday, April 24, 2006

The Torture Chamber

I'm a wimp.

I know it.

And in this case, I don't think "Knowing is Half the Battle."

I think it just makes it worse, you know, knowing....

....that I can birth kids with absolutely NO pain medication, but I cannot handle a simple toothache. Or, I should say, a phantom toothache. Because the tooth's been amputated. So all the pain is really just my mind feeling bad for the poor tooth that got disconnected from the rest of my body.

I think Alfalfa's got the right idea.....give me some ice and gauze or something....

It's definately better than whoever came up with THIS:


For a toothache???

Someone's been smoking something...

Excuse me, but I think I'll stick to my Lortab.

At least it's LEGAL!


As I once told you, I hate having anything done in my mouth, but alas, I needed to be a grownup about the whole thing. So I went. I mean, we finally have dental insurance. Might as well use it.

Didn't help that it was an hour and a half until they called me into a treament room. If they had been a minute or two later, I was outta there, man. And I would've had a decent excuse and everything. If it wasn't for the really interesting book I was absorbed in (uninterrupted reading time.....rare), I think I really would've left. But the opportunity came and went. I was stuck there.

What I was having done was this: Out of my four wisdom teeth (which came in perfectly fine, by the way--no impactions here), one had a really bad cavity and the other three each had a smaller, more manageable cavity. I've known since I was a kid that this scenario was going to come up. My x-rays showed that I had room for the teeth, but since they are so far back in my jaw, my childhood dentist told me that I would probably have to have them taken out, due to decay. There was just no way to get a toothbrush back there to get them good 'n' clean. He was right. And now here I was, in the torture chamber, awaiting my turn.

I am not exaggerating.

It was AWFUL.

For starters, I did not go to an oral surgeon to have the one really bad one extracted. I simply went to my normal dentist. It was only one tooth, right? Why get knocked out for one tooth? Yeah, that was Mistake #1. Then her hygenist asked me if I wanted the gas. I'd had it before, and it seemed all-but-useless to me. Besides, I was quite surprised at how calm I felt. So I passed it up. Mistake #2.

So she numbed me up, and that wasn't so bad. They don't just stick the needle in there cold turkey, they give you a topical numbing agent first. Which is great. Have you ever seen the SIZE of those needles??? Flat out HUGE. Gotta remind myself not to look at the thing. But at least I can't feel it. I'm good. Just slightly tense. I can feel myself rising up to brace for the pain. Which, thankfully didn't come. Phew.

BUT. (There's always a but....)

It didn't work. She had to numb me up at least 4 more times. And not every place she stuck that thing was numb. "Just a little pinch" she says.....HA.....little pinch my nostril. That stinker HURT. Ungg Ungg! was all I could say too. I tell ya, dentists are simply military interrogators that couldn't handle the screaming, so they got another job that inflicts pain. Only the patients can't say SQUAT. How convenient.

Once she finally got the right side of my face neurologically disconnected, she started the extracting. Her assistant hands her these mahonsious pliers and she just goes at it.

Crunch! Eeerrrrrkkk! Crick! Crunch!

It's sounds like rice cripsies on steroids.

(Yeah, not pleasent in real life either.)

But it's not working. She's not getting it out. By this time, every muscle in my body in tense and on high alert; my back is practically off the seat and my head is slamming against the headrest, trying desperately to get away.

I can tell this is a doozy for her. She's got her glasses off now. Asking for yet a BIGGER set of pliers. Is that beads of sweat on her brow? She stands up.

She's standing up, by jolly!! All engines full power!!


When she finally, finally, FINALLY pulls the thing out, we're both a mess. I am visibly shaking, and she is catching her breath. She goes, "O-kkkkkk. Well! Are you alright?"

Yeah, I'm JUSTTTT fine.

Did I say how much I HATE going to the dentist?

And, lucky me, I gotta go back to have the others filled. Oh joy.

Perhaps I won't bring a good book this time

Sunday, April 23, 2006

4 Out of 4 Kids Love It!

Remember how I was talking about Grand Rounds the other day?

Well, it was either that day or the day after when I read about a pediatrician blogger who wanted to start a version of Grand Rounds about kid's health. I thought it was an excellent idea, so I quickly emailed him to encourage him to go through with it.

Well, he did, and the first edition was posted at his site today. And since a good portion of my readership is Moms and Dads, then I would highly recommend that you browse through the submissions. There is one post spotlighted that talks about "fever phobia" and how unnecessary it is. I thought it was excellent and a must read for every parent. Fever in children is seemingly very misunderstood, and many parents go through unneeded stress during a bout with it.

So, without further ado, Pediatric Grand Rounds, Vol 1, Number 1!

(And if you look closely, you'll even see a submission from your favorite blogger.....not that all you junkies haven't read it least those of you who ARE junkies.....which really only amounts to like, my Mother...but I digress....)

Wednesday, April 19, 2006

If I Had, I'd Have An Excuse

Went to Walmart for my bi-monthly romp this morning. Yes, I truly only go 2 times a month as a rule. I HATE going grocery shopping....I positively dread it (similar to visiting the dentist and having teeth drilled, as I will tomorrow, errrr), so I avoid having to do it within all reasonable limits. 2 weeks seems to be the longest I can hold off.

As it is, 2 weeks worth of groceries for a family of 7 take up 2 entire carts (or "buggy" for my Southern friends), full and practically overflowing. Now, remember, Walmart doesn't just sell food in these parts. I can buy jumper cables, underwear, a new plant, and brownie mix all in the same stop. And I do. All products, all the time. Love the Supercenter; "Mom and Pop Shop" eating monster that it is.

Back in the day, when I only had 3 or maybe 4 little ankle biters, I tried shopping for a whole month. Glorious idea! A whole 3+ weeks to enjoy not thinking about shopping. Pure bliss!

Unfortunately, my refrigerator categorically refused to hold all that substance. I won't even begin to recount the details of getting all the food in there. Small children read this blog. It's simply too horrific to share.

Not to mention the copious amount of vegetables, meat, and dairy that don't like to sit around for 3 weeks until they're consumed. I probably wasted 1-2 weeks worth of food because it went bad.

An expensive lesson learned, I dare say.


So about today....

Was at Walmart and finished paying for my stuff (Only one cart this time! HooAhh!), and trucked it out to the van.

Now comes the delicate part. Anyone who has more than 3 kids knows that there's a very special skill needed to balance all those bags in the back of a minivan. Some go to school for it, others are born with it, but either way, this talent must be honed often in order to keep "the touch". Every two weeks seems to keep me in tip top condition.

For example, one cannot place bags of lettuce, tomatoes, and bananas, under bags holding can goods. We all understand this. BUT, what do you do when you have bags with cans AND bread? Or milk AND chips? The rules change, and that's when you need to leave this kind of balancing act to the pros.

So I had it all JUST RIGHT. Everything seemed to be ok, nothing getting squashed. Nothing shifted. Good, good. But then I saw it: the case of Dr. Pepper. 24 cans of pure squish. Should've been first to go in. Now it was last. Stink.

I figured out that if I sat it up the long way, it would fit, right next to the hatch. It was gonna be close. If I juuuuuuust inch it a little this way, it'll probably clear and the door will close.....


Didn't realize it until I was ready to put the key in the ignition. Wha? A door's open? Hmmmm, must be the trunk....

So I get out of the driver's seat, and go to the back of the van and open the door. Yup, it opened way to easily. So I rearrange the box---just the teensiest bit---to get the door to close. SLAM! Now that should do it. Go back to the driver's side, where I can see the dash from the open door.

A door's STILL open! Argggghhhh.

Go back to the trunk, open it, rearrange the box a third time. SLAM! All seams are flush. This looks good....

That "open door" light is still on! I can tell when I get to the driver's side and look in through....

....the open door.

The driver's side door had been open the whole time.

It wasn't the trunk at all. Argh.

And, No, I've never been blond.

Tuesday, April 18, 2006

Grand Rounds

For those of you into reading medical blogs, as I am, let me introduce you to "Grand Rounds".

The term is often used in a hospital setting and is similar to "rounds", which is where a doctor will visit each of his/her patients in the morning and determine how best to manage their care that day. As in, "We saw Michaela on rounds today, and decided to wean her off the ativan drip." Grand Rounds, is where doctors and other health care workers in a specific specialty will convene to discuss a particular case or new procedure. This happens less frequently, but is considered to be very informative. It was this type of situation where Michaela's diagnosis was determined.

Here, in the blogosphere, Grand Rounds is a weekly compilation of submitted blog posts from doctors, nurses, patients, and other health care workers. It is "hosted" at a different blog every week. This week, it is being hosted at Fat Doctor, who is on my blogroll (in the sidebar).

When I get around to it, I find Grand Rounds to be very interesting. I don't usually read every post (the health care reform posts are not really up my alley), but there always seems to be one or two that peak my interest. I especially like the ones where a doctor or nurse is dealing with a specific patient; where that encounter really made an impact on them. For this self-proclaimed "true story freak", those are the best posts.

And, as usual, I cannot vouch for ALL the content, but just use some common sense, and you will probably find something of interest that doesn't irk you. If the first thing you see does, don't be afraid to move onto something else---every author is different!

And if I can remember, I will try to post the link for Grand Rounds every week. Let me know if you find this interesting. If I'm the only one, then I won't bother posting about it!

So, here it is: Grand Rounds, Vol II, Number 30.



Speaking of doctors.....

Here's Michaela with her favorite. Can you guess who?

(And, No, Chief, it's perfectly fine for you to read whatever you want. Just, um, go easy on me and use the comment section......I embarrass WAY too easily! Can you tell? HA!)

Friday, April 14, 2006

Good Friday

First of all, concerning Michaela and our recent "blow" (which, as I said, was not a true blow, as we've known this all along, but it just hurt to hear it, and my feelings were very raw), I so appreciate everyone's comments and thoughts and prayers. That feeling of gratitude cannot be put into words well enough, so let me just:


And would you believe that she had a pretty good day today? She was talking in sentences, playing on the computer, and answering questions. Quite a change from even yesterday. Still drooling, but, ya know, nothing worth complaining about. Just small puddles.......the swimming pool's still defunct.

So, we'll call this Good Friday. And I'm praying for a future of Good Saturdays, Good Wednesdays, and Good Mondays to boot.

Oh, and a Good Sunday, too!

Thursday, April 13, 2006

Git Er Done!

Out of all five of our kids, Asher takes the cake.....


I'm pretty sure that none of our other kids destroyed their first birthday cake so, um, thoroughly. In fact, Noah wouldn't even touch his! We had to push his little hands in it, and even then, all he did was pull them out and hold them up and cry.

But Asher. Now, here's a boy who knows how to get the job done.

(And I'm starting to think that I'm in serious trouble)

Wednesday, April 12, 2006

Glutton For Punishment

"I really don't want to answer that."

This coming from a guy who ALWAYS "answers that". Even when the questions are bizarre, lengthy (like 2 pages worth of email), repetitive, and downright tedious. Even when he's running late, even when he's tired, even when he can't give one right away, he always answers me.

But this time he didn't want to.

And I knew why.

But stupid me, Miss Gotta-Know-It-All, just couldn't leave well enough alone. Had to make sure, had to be certain, just had to ASK.

His face said it all, and I dreaded the look. I'd seen it before. When he dropped the bomb about her having encephalopathy. I asked then. The point blank type questions. The type of questions no parent should have to ask or discuss. And he gave me the look. And said, "I don't really want to talk about that." "Well, for cryin' out loud! (My mind screams) If you don't tell me, who's going to?" But it hurt him too. I could tell by his face. And I let it be. I already had my answer.

So why didn't I just drop it this time? Just take the "no" for an answer? Don't go there, Kell, his face said. Let's just not discuss it.

But I'm a glutton for punishment, I guess.

"Chief, she's crashed so quickly this time, it's so weird."

"Mmmm hmmm, cuz she usually goes down over a period of time, right? So, she was fine until......."

"Yesterday morning she was fine. Yesterday afternoon, she was drooling and talking funny and her arms were a mess. It was that quick. And we've been right on with the meds."

"Yeah, I can see what she's doing....."

"Do you think it's status? (But I know the answer, so I offer it) or the encephalopathy?" (Man! PLEASE think it's status!)

"No, I think it's just the encephalopathy."

(STINK!) "Yeah.......Hey! Can we tweak the meds?"

"Well, may-beeee. A little."

"So I should call when it gets worse? What are we going to do if the Felbamate isn't working? I mean, she's already going downhill.......what do we do then?"

(Silence. Writing on chart.) "I don't really want to answer that."

(Not getting the hint....yet.) "Comon' Chief, it's ok, what is it? Just tell me." (Ohhhhhh, wait, I'm getting this now.)

"I just really don't want to answer that."

(Writes on the chart) "Because there's really not a lot of..........options left ......."

(Silence) "Um, I guess I just answered that."

" did."


The implication of this little "face à face" hit me as I drove home.

"No options. No options. No options."

There's always been options.

Why did he say that? There's always been options! There's still more options!

There's Vigabatrin, and VNS, and the diet again, and, and, and......

But they're not good options.

And I know that.

But I had to make him say it.

And I cried on the way home.


She got worse as the day went on. Drooling more. Slurred speech. Starting sentences, but never finishing them. Her fingers started to cock into odd poses. Like your funny Uncle Norton used to do to act like the boogey man. But it wasn't funny, and she wasn't acting.

I remember the posts I wrote when she was better, and I cherish them. Perhaps.......perhaps they are the last times I will see her that well. Who knows. Certainly not Chief. Certainly not me. Only God, and He's not fessin' up.

So my heart's been heavy since this appointment. That quiver's been in my throat just thinking about it. Thoughts and flashbacks and dissertations just running through my mind. And I'm starting to think: What are we doing here? This is all just not working. Why are we bothering? To prolong her life? What for? So she can see and not eat? Hear and not respond? Feel and not react? What kind of life is this for her? Not to mention the devastating side effects of the meds. Where is my little girl, my child, in the middle of all this?

And then I get my answer in the form of an old hymn. That falling child, falling ever so quickly into a silent little world, ruled by a broken brain........who could not finish a sentence, or hold a cup that afternoon. Starts to sing:

"Great is Thy faithfulness."
"Great is Thy faithfulness."
"Morning by morning, new mercies I see."
"All I have needed, Thy hand hath provided."
"Great is Thy faithfulness, Lord unto me."

Loud and with excitment. Jumbled words trying to keep up with the meter and time. So different, yet so beautiful. Singing with little thought of anyone else.

And I realize:

If I'm going to be gluttonous about anything, it should be about holding her until the end.

And leaving some of the questions unanswered.

I think there's less punishment that way.

Tuesday, April 11, 2006

A Child By Any Other Name......

(Such as:

"Pants Boy"
"Pantser Prancer"
"Dasher and Pantser and Prancer"
"Stinky Pants"
"Ashey Pants"
"Glitter Boy"

and rarely, "Asher")

......Would still be as sweet.

...Happy Birthday Little Man...

Saturday, April 08, 2006

Who's Ologist?

So we're at the dining room table, playing some Rook with some friends. And we're chit chatting. Just hanging out and being casual. At some point, this little FYI is brought up:

"So the date that ____ see's the urologist is the 12th." (Kinda chuckling, because ______ doesn't want to see the urologist). "Notice I didn't say NEURologist, I said URologist......." (outright laughter now)

(_____ says with disgust) "Yeah, well, he may be YUR "ologist", but he's not MY "ologist"!"

WELL! I guess "Grumpy" sure told THEM!

Friday, April 07, 2006

The Good, The Bad, and The Ugly

I've started this step aerobics class, and man, it's pretty fun. I mean, it's not so bad trying to lose weight and shape up when you're having fun doing it, right? Back in the day, I used to do more strenuous things like rock climbing and playing soccer to get the same effect. But now that I'm old and have birthed a basketball team, I guess I need to work out in a safer manner.

Yesterday she really worked us good. The sweat was dripping, and my knees were killing. As well as my calves and my thighs and any other muscle group that happened to get a rude awakening. It was all good, though, loved it. I just love that YEOW feeling after a good workout.

So class was over and some of us were just hanging around and chatting, when someone got out an old aerobics video.


It was Jane Fonda! In leg warmers! With big hair! And, and, and.........sweatbands!

Aaaahhhhhhhhh! Run for the hills!

I just stood there and stared. There were probably 10 people in the "class", all in various forms of 80's regalia. We're talking bangles, and ponytails on the side, hats flipped up, "balloon" pants, leopard print leotards, electric blue eyeshadow and hot pink lipstick.

Can you believe we used to wear that stuff??? Those clothes were hideous! Why didn't we know it back then? Why didn't someone call the fashion police?!?!


I've always thought of myself as an "80's child"; a "gen X-er". But sometimes I wonder if I shouldn't try to get rid of that label. Some 80's stuff was so hideous! .......Well, I guess it wasn't all bad. In fact, I DO have some pleasent memories of my life back during that era. I did a little Googling and found some pretty retro stuff......wicked!


Transformers (yes, even girls liked these)

Jell-O Pudding Pops

Trapper Keepers (that classic rrrriiiip!)

Mustangs (according to Chris)

Underoos (too cool, man)

Thermos Lunchboxes (remember the "click" and "zzzzz" sound?)

Rubik's Cube (never beat the thing)

Lots of the music (U2 baby)

Atari (this is the exact one I had)


Garbage Pail Kids (sick)

Dungeons and Dragons (a little too involved)

Richard Simmons (ohhh, ick)

Jim and Tammy Faye Baker (false "profit")

The Challenger Explosion (sad, sad, sad. She was from NH, too)


Anything we wore (especially on our head)

Hair bands

Tiananmen Square

Super Bowl XX (The Pats lost--bad)


Speaking of the 80's, I, like, found this totally gnarly website with, like, theme songs from some way radical kid's cartoons back then. Enjoy dudes! (and if you didn't watch cartoons back then, feel free to enjoy the wonders of Saturday mornings with Stereo even!! Hey, Dan--they have Gummi Bears!!)


Oh, I am sooooooo lame........

Wednesday, April 05, 2006

What's Important In The End

I homeschool.

I've alluded to this in previous posts. However, I've also alluded to the fact that Michaela is NOT homeschooled. She goes to the county special needs school (which is integrated). She most likely will be the only child I do not homeschool.

I've wanted to homeschool my kids for a very long time. My Mother-in-law homeschooled her kids (including Chris), and my Mom homeschooled my brother. I, on the other hand, have never been taught at home, but I've always seen the benefits to it. And in my mind, the benefits have always outweighed the defecits. Chris and I decided that we wanted (and I do mean WE) to homeschool before we were even married.

I was pretty disappointed when I realized that there was no way I was going to get anything across to Michaela effectively by schooling her at home. I know, I know, there are plenty of people that have done it. And I agree that it can be done. But, hey, I know my limits. I'm not going to frustrate myself (and her) by being a die-hard with this. It was a hard decision, and I agonized over it, but what had to be done, had to be done. She had to be schooled, and I just couldn't do it and maintain my sanity.

Don't misunderstand me. I do not feel as though my children are an aggravation to me. I do not WANT them to "go away". I do not enjoy the fact that she's away from me for most of her day. I do not look forward to her going back to school after a vacation.....ok, not entirely (but anyone could use a break from Chatty Cathy).

And it also bothered me that Alabama schools are NOT top of the list in this country. I'm not sure what the current statistics are, but last I knew, Mississippi was bottom of the barrel, and Alabama was second in line (feel free to correct me here, if you know). Didn't make me feel too good sending her there. Yet, when it really came down to it, I realized that in many ways it didn't matter. What I needed was a place where she would be loved and taken care of. Learning was secondary in my mind. It still is.

And today just reiterated and solidified my feelings on this matter.

We had her annual IEP (Individualized Education Plan) meeting. Her teacher, her Speech Pathologist, and the Assistant Principal (who's in charge of all things special needs) were there. In some ways, I always look forward to these little meetings. In other ways, I get very irritated with what our government puts these teachers through in order to meet state requirements.

Actually, it all revolves around the "No Child Left Behind Act".

Love George Bush. Hate this Act.

It puts so much pressure on teachers to meet impossible and outrageous goals for special needs kids. I mean, let's think about it:

Should a child who's disablilities keep them from walking or talking or dressing themselves, NEED to do algebra? Certainly not. So why are teachers focusing on such ridiculous goals for their special needs classes? Because of the No Child Left Behind Act. They're compelled to. Where they should be helping that specific child with maybe, holding a spoon, or making a gesture to say they want to eat, these teachers have to somehow, someway get them to understand concepts that are useless for that child.

Yet, I just love Michaela's teachers. They are some of the most wonderful people I know. And I don't care that Alabama is low on the academic totem pole, they love my child. And even in the face of useless goals and mind boggling paperwork to satisfy the government, they still will take the time to put that all aside and just enjoy her company. To engage her in meaningful conversation. To notice that she's not eating so much these days. To show her how to use the bathroom (not a pleasant task AT ALL), or how to hold that spoon.

Perhaps Michaela will never be able to count to 20. I doubt she will ever know the names of all the planets. Or even be able to read a sentence or write her name. But does that really matter? What kind of person do I want THIS child to be?

I want her to know that she's loved. I want her to enjoy people. I want her to make a picture and enjoy knowing that she did that. Even if I can't figure out what it is. I would also like for her to be able to continue to feed herself. Maybe use the bathroom. To enjoy a book read to her. All very minor things, yet they're the things that are most important for her, in her life. She will never be a rocket scientist. She quite possibly will never even be a cashier at Walmart. But if she can be a joy to people, if she can be a bright smile in someone's dreary day, would I complain?


So, if I had to do it all over again; if I had to put another special needs child in public school, I would do it in a heartbeat. Even if her teachers couldn't pass some country wide test (although I'm sure they could, but perhaps not ALL Alabama teachers would be able to), why would that matter to me, when Michaela needs compassion, understanding, and patience? You can't teach that to a person. It's simply a bonus that her teachers can also teach difficult to teach students, at least in my mind. I sure couldn't do it.....

And as for "No Child Left Behind".....I think that Act needs to be "left behind". At least for special needs kids. There's very little place for it in that setting. And it keeps Michaela's teachers from doing what they do best:

Being with my child, and helping her be the best SHE can be. Focusing on what's important in the long run.

What more could I ask for?

Saturday, April 01, 2006

Feel Free To Learn At My Expense

I was expecting this....

But, instead got something closer to this......

I should've expected his recommendation to be a little off.

Like $300 dollars off!

He didn't even LOOK professional. All the red flags were flying, and stupid me didn't pay attention.

So, a very close family friend came over to give me a second opinion on my "really broken" dishwasher. He found the problem. The part cost $30.

He replaced it yesterday, and it works likes new.

I am so irritated with myself.

Cuz I paid that "kid" $65 bucks to lie to me.

Moral? Get someone you trust, Kell---you'll save yourself the stress......and money.

((Arrrrrrggggghhhhhhh, I HATE learning the hard way!!!))