I've got some ideas...
When the World Health Organization comes up with a vaccine to prevent stupidity, perhaps it could be tested on people who think like this. What in the world is 10% of the Eygyptian population (because that's about the percentage that actually consumes pork) supposed to do with 100% of the pig meat, ALL AT ONE TIME? That's a lot of sausage gravy and biscuits!
When a Whole Truth and Nothing But the Truth Vaccine is invented, Mainstream Media Personnel should be the first in line. (And please, Ms. Needle Injector, use the BIGGEST needle you can find.) Perhaps then, we'll get the facts straight in stories like this one. This was not an American child. This child was brought to Texas from Mexico.
When the Anti-Fear Vaccine is created, it should be tested on people who watch this first, for a good control group in future testing. ;-)
----------------------------------
Wash your hands. Don't share spoons and straws. Wash your hands. Stay away from public drinking fountains and pay phones. Wash your hands. Maybe try a vitamin or two, eat lots of fruits and vegetables, drink lots of water...and WASH YOUR HANDS.
Oh, good grief.
Wednesday, April 29, 2009
Monday, April 27, 2009
A Question of Curing
I absolutely love Jimmy Stewart. My favorite Christmas movie is It's a Wonderful Life. I cry Every. Single. Time. I watch it. He learned just how important his role was in the lives of the townspeople, and how he made a real difference. Ok, so pretend I'm a maple tree and call me Sappy - won't bother me a bit.
Savannah recently picked up Jimmy Stewart's comedy, Harvey, at the library. He plays Elwood P. Doud, a perfectly normal man, except that he is always talking to his imaginary friend Harvey, a giant rabbit that only he can see. A few of his friends go along with him, but every one else, including his sister, is positive he's lost his mind and seeks to commit him to the home for the insane. His sister manages to convince him that the curative treatment is a good thing, and because he loves her, he agrees to the fix-everything injection. He doesn't want it, and he doesn't want to lose Harvey, but he wants to make his sister happy.
After he agrees to be cured, his sister is conversing with a cab driver who routinely brings people to this doctor for the same treatment - a treatment that will make them fit in with polite society. The man tells the sister that he always enjoys the drive TO the asylum. He enjoys looking at sunsets and birds that may actually not be there. He likes the happy conversations with the people who tip generously and love largely. But he never likes the drive AWAY - after the cure, he says, those people turn into normal people who are mean, and he just doesn't like them then. The sister ultimately realizes that Elwood is just fine the way he is, and saves him from being cured just in time. They go back home with invisible Harvey tagging along.
In the world of Angelman Syndrome, we're searching for a cure. When Gabe was diagnosed eight years ago, we were told there was no cure, and led to believe that there probably never will be. This belief was premature. Researchers are now working on several possibilities to cure this chromosomal disorder, and have in fact cured it in lab mice. Scientists are specifically looking at three different types of a cure. They are unsure about how any possible cure could or would be delivered to humans. There are mountains of questions with barely a mole hill of answers.
I am excited about the possibility of a cure. Let's be honest...I'm ECSTATIC about a cure!! The idea that my son can someday walk without assistance, or carry on a conversation with me, or kiss his wife and tuck his children into bed after an exhausting day at the zoo... Who wouldn't want that for their children?
It really is more than I have ever thought possible. It is impossible for me to imagine what Gabe's life could be like if Angelman Syndrome is someday curable. Because the research is still in the early stages, the doctors have NO clue what a "cure" would look like, or if one is even achievable for older children and adults.
But...
Science and technology advance so fast. Who would have thought, 50 years ago, that the genome project would ever become reality? Heck, 50 years ago was it even being considered? (Dr. Weeber, one of the researchers on the AS project, talked about this in the February 2009 FAST Newsletter.)
Obviously, a cure is years away, and I'm not holding my breath waiting for Gabe to wake up normal someday. That word...normal...is such a challenging word to define. Shortly after Gabe was diagnosed, I was in a heated debate on one of the online AS forums, and someone told me my thinking was "fundamentally flawed" when I made a comment about how it would just be weird to wake up someday to find Gabe standing over my bed, miraculously saying, "Hey Mom! Let's go to McDonalds for breakfast!"
(I'm not goofy enough to assume that any type of cure would give immediate results - I was sort of playing Devil's Advocate), but the direction that debate was going was basically that if a cure was available and we parents didn't choose to have our affected child participate, we would be horrible parents. However, I don't intend to let Gabe be a guinea pig for something that may or may not work, just because there's a possibility he could be normal. What is normal? Would Gabe want that? How can we know that he would choose that? Would we make our decision to accept or refuse treatment based on OUR wishes, or on Gabe's? What aspects of Gabe's life would change following a treatment? Would he still be a perpetually happy person? Would he advance through all the developmental stages he's not yet reached? Would a cure mean he becomes a snarly, crotchety old man who no longer likes to have the back of his neck tickled and no longer finds amusement in simply watching other people laugh?
Accepting Gabe's diagnosis wasn't easy for me. Realizing that the child I love will never be the adult I envisioned required me to travel down some roads that were full of very painful learning bumps. Now I'm being told that there's a possibility that I could someday be traveling another road to watch my son, maybe, reach the potential that I had originally hoped.
But what does GABE want? Does he want that cure? Does he think he needs to be fixed? What Harveys will he lose if we cure him?
Thankfully, I don't have to make a decision today. On that, you may quote me.
Savannah recently picked up Jimmy Stewart's comedy, Harvey, at the library. He plays Elwood P. Doud, a perfectly normal man, except that he is always talking to his imaginary friend Harvey, a giant rabbit that only he can see. A few of his friends go along with him, but every one else, including his sister, is positive he's lost his mind and seeks to commit him to the home for the insane. His sister manages to convince him that the curative treatment is a good thing, and because he loves her, he agrees to the fix-everything injection. He doesn't want it, and he doesn't want to lose Harvey, but he wants to make his sister happy.
After he agrees to be cured, his sister is conversing with a cab driver who routinely brings people to this doctor for the same treatment - a treatment that will make them fit in with polite society. The man tells the sister that he always enjoys the drive TO the asylum. He enjoys looking at sunsets and birds that may actually not be there. He likes the happy conversations with the people who tip generously and love largely. But he never likes the drive AWAY - after the cure, he says, those people turn into normal people who are mean, and he just doesn't like them then. The sister ultimately realizes that Elwood is just fine the way he is, and saves him from being cured just in time. They go back home with invisible Harvey tagging along.
In the world of Angelman Syndrome, we're searching for a cure. When Gabe was diagnosed eight years ago, we were told there was no cure, and led to believe that there probably never will be. This belief was premature. Researchers are now working on several possibilities to cure this chromosomal disorder, and have in fact cured it in lab mice. Scientists are specifically looking at three different types of a cure. They are unsure about how any possible cure could or would be delivered to humans. There are mountains of questions with barely a mole hill of answers.
I am excited about the possibility of a cure. Let's be honest...I'm ECSTATIC about a cure!! The idea that my son can someday walk without assistance, or carry on a conversation with me, or kiss his wife and tuck his children into bed after an exhausting day at the zoo... Who wouldn't want that for their children?
It really is more than I have ever thought possible. It is impossible for me to imagine what Gabe's life could be like if Angelman Syndrome is someday curable. Because the research is still in the early stages, the doctors have NO clue what a "cure" would look like, or if one is even achievable for older children and adults.
But...
Science and technology advance so fast. Who would have thought, 50 years ago, that the genome project would ever become reality? Heck, 50 years ago was it even being considered? (Dr. Weeber, one of the researchers on the AS project, talked about this in the February 2009 FAST Newsletter.)
Obviously, a cure is years away, and I'm not holding my breath waiting for Gabe to wake up normal someday. That word...normal...is such a challenging word to define. Shortly after Gabe was diagnosed, I was in a heated debate on one of the online AS forums, and someone told me my thinking was "fundamentally flawed" when I made a comment about how it would just be weird to wake up someday to find Gabe standing over my bed, miraculously saying, "Hey Mom! Let's go to McDonalds for breakfast!"
(I'm not goofy enough to assume that any type of cure would give immediate results - I was sort of playing Devil's Advocate), but the direction that debate was going was basically that if a cure was available and we parents didn't choose to have our affected child participate, we would be horrible parents. However, I don't intend to let Gabe be a guinea pig for something that may or may not work, just because there's a possibility he could be normal. What is normal? Would Gabe want that? How can we know that he would choose that? Would we make our decision to accept or refuse treatment based on OUR wishes, or on Gabe's? What aspects of Gabe's life would change following a treatment? Would he still be a perpetually happy person? Would he advance through all the developmental stages he's not yet reached? Would a cure mean he becomes a snarly, crotchety old man who no longer likes to have the back of his neck tickled and no longer finds amusement in simply watching other people laugh?
Accepting Gabe's diagnosis wasn't easy for me. Realizing that the child I love will never be the adult I envisioned required me to travel down some roads that were full of very painful learning bumps. Now I'm being told that there's a possibility that I could someday be traveling another road to watch my son, maybe, reach the potential that I had originally hoped.
But what does GABE want? Does he want that cure? Does he think he needs to be fixed? What Harveys will he lose if we cure him?
Thankfully, I don't have to make a decision today. On that, you may quote me.
Friday, April 24, 2009
Holy Bagel, Batman! It's Jesus!
For those of you that missed out on the opportunity to bid on the Virgin Mary grilled cheese sandwich...and haven't saved enough money to travel to the far corners of the world to view the obscure Jesus shadow on a church wall...and tried but just couldn't quite make the perfect omelet resembling Moses...
I offer you...
...the Jesus Pan.
Call your closest friend, and for a mere $29.99, you can both share in this spiritual bliss. What says "Jesus Love Me" better than a bagel with Freaky-Eye Syndrome!
You'll be the envy of all your family when you prepare your holiday meals with this special, life-changing pan. You may even be asked to preach at your church once your pastor finds out you Worship with Jesus at every meal. Order in bulk at a special discount - these make excellent Sunday School gifts! Pens with your church name are so yesterday!
Despite the oddly-placed punctuation, and the fact that Jesus looks like he's using weird halos to recover from a car accident, this special kitchen tool has been featured on the Jay Leno show, and everybody knows how spiritual that man's shows can be!
Don't schedule your next pancake supper/bingo night until you've called and ordered your Jesus Pans. Your church friends will thank you.
I offer you...
...the Jesus Pan.
Call your closest friend, and for a mere $29.99, you can both share in this spiritual bliss. What says "Jesus Love Me" better than a bagel with Freaky-Eye Syndrome!
You'll be the envy of all your family when you prepare your holiday meals with this special, life-changing pan. You may even be asked to preach at your church once your pastor finds out you Worship with Jesus at every meal. Order in bulk at a special discount - these make excellent Sunday School gifts! Pens with your church name are so yesterday!
Despite the oddly-placed punctuation, and the fact that Jesus looks like he's using weird halos to recover from a car accident, this special kitchen tool has been featured on the Jay Leno show, and everybody knows how spiritual that man's shows can be!
Don't schedule your next pancake supper/bingo night until you've called and ordered your Jesus Pans. Your church friends will thank you.
Thursday, April 23, 2009
A Little Boy's Thoughts...
Today I took the kids to my sister's house to see the chickens and ducks. Mister D was happy chasing the dumb birds all over the yard while they squawked their indignation at having to deal with both he and our anti-social dog.
He fed sticks and walnuts to the fish in the small pond. When he was scolded for disobeying a direct order and throwing a rock into the water, he very firmly informed me, "I not throw it. I drop it." This was true.
He found the dirt pile and discovered that the dog would jump and catch clumps of hard dirt if he threw them up for her, so he spent several minutes in complete bliss "making it rain" dirt. His deep, hearty chuckle and the impish grin on his face was pure BOY.
He was content with throwing handfuls of dirt, until Aunt Teresa brought out the shovel and pail. Gone were his concerns about dirty hands. Out of mind were any thoughts about playing with ducks. He was now a workin' man. Why is it that a pail and shovel will entertain little boys for hours on end?
This short visit occurred during nap time, so the ride home was relatively quiet. Baby T was sleeping peacefully within minutes of leaving the driveway, and Mister D was silent. I glanced in the rear view mirror, thinking he would be asleep.
He wasn't.
He was simply staring out the window with a content smile on his little face.
I wonder what he's thinking when he's quiet, which isn't often. It seems that he's the most subdued when we're in the van. His countenance is pensive and he almost appears to be in another world. Is he remembering a ride with his mother? Does something look familiar to him?
Today, he is happy to sit and watch the field for cows and butterflies. And I am happy to watch him watching.
He fed sticks and walnuts to the fish in the small pond. When he was scolded for disobeying a direct order and throwing a rock into the water, he very firmly informed me, "I not throw it. I drop it." This was true.
He found the dirt pile and discovered that the dog would jump and catch clumps of hard dirt if he threw them up for her, so he spent several minutes in complete bliss "making it rain" dirt. His deep, hearty chuckle and the impish grin on his face was pure BOY.
He was content with throwing handfuls of dirt, until Aunt Teresa brought out the shovel and pail. Gone were his concerns about dirty hands. Out of mind were any thoughts about playing with ducks. He was now a workin' man. Why is it that a pail and shovel will entertain little boys for hours on end?
This short visit occurred during nap time, so the ride home was relatively quiet. Baby T was sleeping peacefully within minutes of leaving the driveway, and Mister D was silent. I glanced in the rear view mirror, thinking he would be asleep.
He wasn't.
He was simply staring out the window with a content smile on his little face.
I wonder what he's thinking when he's quiet, which isn't often. It seems that he's the most subdued when we're in the van. His countenance is pensive and he almost appears to be in another world. Is he remembering a ride with his mother? Does something look familiar to him?
Today, he is happy to sit and watch the field for cows and butterflies. And I am happy to watch him watching.
Tuesday, April 21, 2009
My Cuddly Gabe
One of the upsides to Angelman Syndrome is that Gabe is very cuddly. He occasionally displays his irritation with me by ignoring me or sticking out his bottom lip, but that's a rare occurrence. He is almost always happy. He is amused by just watching people run around and act goofy. He will crawl into my lap and fall asleep, or just sit there and watch the other kids play. At 14, he's not Too Cool to hug Mama.
Saturday, April 18, 2009
My BFF, Revisited
Lots of people say they don't care what people think, but few people actually manage to live that statement. My husband truly doesn't care. He will never be accused of being Politically Correct. He has no desire to Keep Up With The Joneses. It doesn't bother him one smidgen that he doesn't have Friends In High Places.
He is fortunate to not be bothered by other's opinions, but this is sometimes seen as nonchalance regarding people's feelings. He has occasionally found himself in the doghouse because of his bluntness. He doesn't deliberately hurt people, because he's actually very kind-hearted. He doesn't tolerate public stupidity well, but he's reasonably social and friendly.
He's well aware that his supposedly-cavalier attitude is misunderstood by most of society. He even gets enjoyment from that realization at times. That's when the fun begins.
Tom is the kind of guy who will use Duck Tape to fix things, without regard to how it looks. He will rig something up to save the cost of a Professional Repair Job. Remember his car and his football?
Well, his car is currently under the weather. (Most people would say it was junk-yard bound when he got it, but most people aren't Tom.) She's a faithful little thing, requiring little more than a quart or two of oil every once in a while, very few gas refills, and a couple tomato soup cans and coat hangers to repair muffler damage. Even the best of friends, however, occasionally get sick. LC's brakes have been balking for several weeks, and Tom has become quite adept at down-shifting to stop her.
As luck would have it, his parents were at our house when the brakes quit completely. (I should probably point out that Tom's dad is one of those people that just Don't Get Tom. His mother - TOTALLY gets Tom! He came by his nature honestly! But Dad...nope, just doesn't...never has, never will, doesn't even try.) They had stopped by for a few minutes, just before Tom got home from work, and were in the house talking to the kids. I was standing where I could see out the front door, but they couldn't.
I heard Tom's car coming down the street. I heard the engine shut off, thinking it sounded a little closer than normal. I looked out the window just in time to see LC bump up onto our curb and into our front yard. Just as quickly, the engine restarted, and I saw LC rolling back off the curb at an odd angle.
Taking everything I know about my husband into account, combined with the knowledge that he just narrowly missed hitting the back of his father's truck was hilarious. I was laughing like crazy, and didn't bother to explain to them, because I knew that his dad wouldn't find it amusing. This just made it more funny to me.
The problem of the car not having brakes means that either Tom has to fork over some money to a Professional Repair Man, or he has to find another mode of transportation if he intends to keep food on our table. Since there is no more snow on the ground, his choice was to save money right now.
We were fortunate to find some really nice, used, PLAIN bicycles about a month ago at a very nice price. I don't like speed bikes. I just want a normal bicycle that will move in a forward motion when I peddle. I don't need fancy-schmancy. We bought a bike trailer/stroller combo for the little ones, and now we can go for rides on nice-weather days. Free entertainment is right up Tom's alley. Also up Tom's alley is biking to work.
It's 6 miles to Tom's place of employment. He goes in at 6 AM. He's been riding in 33-degree, rainy weather. He doesn't mind the cold OR the rain. He just has to prepare, which is yet another source of entertainment.
Never one to let a Make Deanna Laugh opportunity slip by, this is the point where he yells, "I'm Crowning!!" (Yeah, yeah - I got yer CROWN right here, buddy! Don't even GO there with me!)
Genius. Ingenious. Depends on your perspective. I happen to think he's not only amusing, but pretty darn fun to be around.
He is fortunate to not be bothered by other's opinions, but this is sometimes seen as nonchalance regarding people's feelings. He has occasionally found himself in the doghouse because of his bluntness. He doesn't deliberately hurt people, because he's actually very kind-hearted. He doesn't tolerate public stupidity well, but he's reasonably social and friendly.
He's well aware that his supposedly-cavalier attitude is misunderstood by most of society. He even gets enjoyment from that realization at times. That's when the fun begins.
Tom is the kind of guy who will use Duck Tape to fix things, without regard to how it looks. He will rig something up to save the cost of a Professional Repair Job. Remember his car and his football?
Well, his car is currently under the weather. (Most people would say it was junk-yard bound when he got it, but most people aren't Tom.) She's a faithful little thing, requiring little more than a quart or two of oil every once in a while, very few gas refills, and a couple tomato soup cans and coat hangers to repair muffler damage. Even the best of friends, however, occasionally get sick. LC's brakes have been balking for several weeks, and Tom has become quite adept at down-shifting to stop her.
As luck would have it, his parents were at our house when the brakes quit completely. (I should probably point out that Tom's dad is one of those people that just Don't Get Tom. His mother - TOTALLY gets Tom! He came by his nature honestly! But Dad...nope, just doesn't...never has, never will, doesn't even try.) They had stopped by for a few minutes, just before Tom got home from work, and were in the house talking to the kids. I was standing where I could see out the front door, but they couldn't.
I heard Tom's car coming down the street. I heard the engine shut off, thinking it sounded a little closer than normal. I looked out the window just in time to see LC bump up onto our curb and into our front yard. Just as quickly, the engine restarted, and I saw LC rolling back off the curb at an odd angle.
Taking everything I know about my husband into account, combined with the knowledge that he just narrowly missed hitting the back of his father's truck was hilarious. I was laughing like crazy, and didn't bother to explain to them, because I knew that his dad wouldn't find it amusing. This just made it more funny to me.
The problem of the car not having brakes means that either Tom has to fork over some money to a Professional Repair Man, or he has to find another mode of transportation if he intends to keep food on our table. Since there is no more snow on the ground, his choice was to save money right now.
We were fortunate to find some really nice, used, PLAIN bicycles about a month ago at a very nice price. I don't like speed bikes. I just want a normal bicycle that will move in a forward motion when I peddle. I don't need fancy-schmancy. We bought a bike trailer/stroller combo for the little ones, and now we can go for rides on nice-weather days. Free entertainment is right up Tom's alley. Also up Tom's alley is biking to work.
It's 6 miles to Tom's place of employment. He goes in at 6 AM. He's been riding in 33-degree, rainy weather. He doesn't mind the cold OR the rain. He just has to prepare, which is yet another source of entertainment.
Never one to let a Make Deanna Laugh opportunity slip by, this is the point where he yells, "I'm Crowning!!" (Yeah, yeah - I got yer CROWN right here, buddy! Don't even GO there with me!)
Genius. Ingenious. Depends on your perspective. I happen to think he's not only amusing, but pretty darn fun to be around.
Wednesday, April 15, 2009
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