Rett Syndrome hasn't taken the joy out of Campbell's life. She's a beautiful 5 year old who can get almost anybody to do what she wants with a smile.
Preschool
I dreaded this day. Her first day of school. I was scared of how the other children would treat her. I was scared of how the teachers would treat her. It's bad enough that a lot of doctors didn't know much, if anything, about Rett Syndrome, and I knew the teachers didn't know what to expect.
Campbell on her first day of school. She seemed to be telling me she'd be fine.
She seemed eager to get inter a new situation. I realized how much I'd been wanting to shield her from the rest of the world, but she needed to be a kid. I had to laugh a little, she looked at me and reassured me that she'd be ok.
She was right. She's got suck a wonderful smile, the other kids would wind up giving her all of the toys there, one at a time, over the day, just to see who got the biggest smile. This continued. Apparently, children have to be taught to treat other kids differently; none of them thought of her as any less than themselves.
She keeps engaged, and can enjoy the activities the other children enjoy - she just needs help with the motor skills.
For quite a while, I was happy that Campbell didn't show any signs of seizures, which is a huge concert with Rett Syndrome. She started having seizures, though, and seemed to have them in spurts. It's absolutely maddening to have to watch your child go through that.
She's been in the hospital a few times, as they have gotten too frequent on several occasions. She is completely exhausted, and sometimes couldn't rest more than 30 seconds between seizures. They would give her medicine, which was quite sedating(though I couldn't imagine her not needed the rest), and eventually stabilized her.
One of her hospital visits.
At home, she's on anti seizure medicines, which have helped a lot, but have also made her very much more tired. She is a bit more quiet more often, but she still manages to be one of the happiest girls I know. She naps more frequently, but "recharges her batteries" quickly.
As of yet, she's still non-ambulatory, but makes strides in therapy. Doctors have said there's no reason for her not to walk eventually, and it's the best for her prognosis, and fending of scoliosis, another common complication with Rett girls.
Medical news is very positive. Despite the relative rarity of Rett, more and more potential treatments are being developed. I can't stress this enough:
Treatment of Rett Syndrome can lead to effective treatment of Epilepsy, Parkinson's, Autism, Alzheimer's and many more. It is considered the "Rosetta Stone of neurological conditions".
For all the fear I've had, and still have, that Rett will keep Campbell from enjoying life, she's amazingly positive. She's still almost always outwardly happy right up until the point she needs something, and needs it quite a bit.
She's also still a fan of daddy making faces, and tickle-time.
I've been single nearly 3 years now. I have my reasons, and yes, some days it would be nice to share certain things with. Blah blah blah...
Valentine's Day is almost here. Valentine's woes aren't all specific to Valentine's Day for some. It's the last day set aside for quite a while that reminds you that you don't have a significant other. The whole winter, for us in the Northern Hemisphere(the BEST hemisphere!) can feel a little lonely with the cold and lack of sunlight. Dwelling on that shit gets one nowhere, though.
I love the idea of romance. I don't mean being with someone in a codependent fashion just so one doesn't have to be single, I mean the real thing. There's the general idea one gets from movies, TV and books, but I think the specifics are different for each person.
Enough about that. I just want to write a little about my favorite couple, even though they aren't real people.
Kermit and Miss Piggy
I identified more with Kermit than with G.I. Joe growing up. I like the idea of being the quiet romantic that just wants to make people smile. Some think he's a pushover, or even "whipped", but it's hardly the case.
He's a leader. He doesn't order people around, he certainly doesn't tell his girlfriend what to do, yet everyone looks up to him. He's a genuine fella.
He's in charge, and doesn't just allow himself to dream: he doesn't even question why someone wouldn't. Life without dreams isn't nearly as good as with, no matter how lofty they may seem.
His goals aren't money and fame, just bringing a little happiness to as many people as he can.
Miss Piggy has loads of self confidence. In fact, the only other person's opinion she really values is Kermit. Even then, it doesn't affect her view of herself.
She's passionate. Wow. She seems high strung and temperamental often, sometimes to the point of a (usually deserved) karate chop to the stomach.
The two make sense. For all of his being a dreamer, she's the one head-over-heels for him. He provides a calm strength that goes well with her passion for...well, everything she does. They both have their own separate happiness, but the two are so much better together.
Thanks for reading this far. Be it alone, or with a special someone that makes you happy to make happy:
This is one of those subjects where, although people won't admit to themselves they judge others, will have some people make up their mind about me one or two sentences in. I ask you to read this with an open mind. If you're a person of faith, it shouldn't be a problem. If your faith can't be questioned and remain intact, it's not faith to begin with.
Yes, I'm "going there". I often do. I'm one of those that is often labeled as having lost his faith. I grew up going to church, with about the best bunch of supportive people you could imagine. I chose to be baptized at age 19. That was also when I "lost my way".
I had always been fascinated by science, and now that I was a free man (high school graduate) I didn't have any assigned reading, I got to choose what and how I learned. I learned as much as I could find about quantum theory and astrophysics. Opening my mind to new ways of thinking about existence, a thought kept tugging at the back of my mind. The right words were never there, so i kept plodding along. I read a little about Plato, Copernicus, Galileo, Newton, and Einstein, and that tug finally found the words it needed to sound alarms in my head:
There is little to no place in religion for the Universe. Writings are human-centered, and given what learning was available when writing, why not? But to keep the human-centric nature of existence didn't make sense. Sure, I understand people want comfort in an afterlife. People need to know that if they follow a checklist handed down by some guy on a podium each Sunday, they will live forever, without having to make any tough moral choices themselves. People need to know it's going to be okay.
I don't intend for this post to focus on any one religion. When I say "God", I'm not saying YHWH(Yahweh), Jesus, Buddha, L. Ron Hubbard, or anything specific. God is not a name. Like when you say "Dumbass", it isn't their name - you're saying what they are.
The Universe is huge. All of space-time, dimensions we can't fathom, and we are a minute speck on a minute speck on...you get the idea. What we experience is the smallest fraction of what is in the Universe. So why would any All-knowing, all-seeing God even put that stuff there?
OBEY
Who knows? First of all, a being that can be aware of every subatomic particle winking in and out of existence from the beginning to the end of time is a being whose thought processes we cannot hope to fathom. Not in the space of an old book that talks a lot about who begat whom, and what to eat on what days, certainly not in the imaginings of a science fiction author. This is a level of thought that we couldn't even begin to define with all the words in all the languages people have or will ever have.
I began to realize religion, from what I've read, is taking these immense, wondrous and often exotic workings, most of which we will never experience in our tiny little pinprick corner of existence, and dumbing it down to fit into a book. Even the book is dumbed down. One bite-sized sermon, often out of context will feed your spirit for a whole week. Let someone else read it to you, tell you what they think it means, and just obey.
That line of thought started to trouble me even more. Worship a God that has brought all this marvelous stuff into existence, but get angry at people who try and learn about it. Also, if you enjoy any of this great gift, you're sinning.
“We are all connected; To each other, biologically
Some of the more alarming products I've seen of the dumbed-down-existence practices, is "Intellegent Design". It is not science. The argument "It's too complex, there has to be something doing it..." or
"You can't explain it, it has to be God." Is saddening. Neil deGrasse Tyson, of the Hayden Planetarium, said that when you think of God in these terms, God becomes "an ever-receding pocket of scientific ignorance."
So far, the best I've been able to come up with, as far as God goes is something like this:
God is infinite - everything we can and can't see. God encompasses an infinite existence. We are finite beings. We look from the inside, learning more and more all the time, but as our time is finite and ends, we take our experiences and perceptions from the finite to rejoin the infinite. Even using the term "God" evokes images of someone who is basically a magical human.
I don't even know how much I believe that. It doesn't matter what you believe, believing something, no matter how loudly, won't change what's going on. If there's Karma, or an afterlife, you just wind up looking like a jerk for eternity. Treat people with respect. Grow as a person, and help others grow. Be willing to change what you think to accommodate what you learn.
God's not some creepy old white man in the clouds spending the bulk of his energy telling us what to eat on what days, or campaigning for Republicans. What I believe is God, simply put, is everything. Even referring to it as "God" kind of dumbs it down. There doesn't need to be an agreed-on being. It's not up to us. Believe what you honestly feel is right, out of the positive feelings you get, not out of fear, or hatred, or anything someone tells you makes you any better than anything else.
Since I've lost my way, I've never been more spiritually enlightened. I marvel at existence every day, from the subatomic to the interstellar, there's always more to learn, and then still more to realize that we haven't even begun to question. I've found much more peace in that than could be written in words.
I'm not saying I'm right and you have to accept it, then again, what's true and what's not isn't really up to us, no matter how much we try and say otherwise.
Way
back, at age 19, I decided to start running to get in shape. I loved
it. I managed to run every day, which is a big deal for me. less than 6
months after I started, I was stopped by my first arthritis flare in my
ankle. I had no idea what it was at the time, but it scared me, and had
me on crutches or limping for 5 months.
After that, it came and went, but the swelling kept my foot from bending
correctly, so no more running for me. The arthritis got progressively
worse, sometimes keeping me bedridden for weeks. Then, between flares,
it was all I could do to get some of my strength back for another round
of flares.
I even climbed several mountains in the meantime, when my joints permitted, but being able to jump or run, to propel myself through the air one leg at a time, wouldn't come to me. It had been frustrating to say the least.
I read up on everything I could, and was
particularly interested in the effect of dopamine in autoimmune
diseases. I had noticed if I was in the middle of a flare, but I heard a
good song, or something else that made me happy despite the pain, I'd
sometimes get an amazing, euphoric feeling, and that would set about
recovery for that round.
I don't know if anyone knows the full
story of what I've gone through over the last two years, but it's been
rough to say the least. Through it, I found new ways to look at things,
to figure out what's really important, figure out where I'm going, and
to feel halfway decent about myself for I believe the first time in my
life.
January had me bedridden two separate times, but I didn't
let the depression from prolonged pain win that time. I've had only
minor flares since, the most recent on my hand lasting for LESS THAN A
DAY.
I thought that was good news, but today, while out
walking London, I did something, just to see if I finally could, and I'm
sure I looked a lot like a drunken asshat.
I've heard a lot about people wanting
to shut down borders, and complaining about pressing 1 for English.
We are a country of immigrants. Don't
take my word for it, ask the Statue of Liberty.
"Give me your tired, your poor,
Your huddled masses yearning to breathe free, The wretched
refuse of your teeming shore. Send these, the homeless,
tempest-tossed to me. I lift my lamp beside the golden door."
True story.
-Emma Lazarus, “The New Colossus”
This was selected as THE greeting to
people coming to our country. It was to represent what we all work
for – a better future, and the freedom to change things for the
better.
People don't seem to be able to respect
the fact that there are other languages in the world, even worse if
some of them make it into our country. For anyone semi-literate in
history, it should be recognized as a possible turning point toward
something dark. Look at what has happened to other countries when
they've shut out others, or blamed people of another culture for
their problems.
Americans are used to convenience
rather than effort, especially if it means their horizons might be
broadened, or something might make their life experience just a
little more enriching.
But...but...but they get stuff!
There's a lot of posts on social media saying things like "In Korea they beat you with splintery wooden dildos but in America you get a golden unicorn that poops heroin that they can sell to neighborhood youths, and benefits." - food stamps, social security, driver's licence... wait a second.
Anyone who has applied for anything knows that you need a social security number to get anything like this. To have a social security number, you must be a citizen. And if someone steals a social security number to get a job? They pay a third of their income into SS, and will never see a penny of it.
So, people have chosen to forgo common sense, especially when it means they can blame everything wrong in their lives on people with brown skin. Stay classy, America.
Beyond the common sense, there's a lot of actual facts about immigrants. They come here to work. They see opportunities we Americans wouldn't consider. Take a look at northeaster Ohio. Immigrants coming to work and start businesses have grown local economies by billions.
So, the history and facts aren't on your side. Maybe it's all about how hard it is to press a button for English when you're on the phone. It took me longer to type that sentence that it has ever taken me to press "1".
Speek thuh langooedge, leik i doo,
I do favor those within out borders
learning English. Not for my own peace of mind, but because their
stories and voices can be added to the rich tapestry of the America I
grew up loving. Our country is made up of too many other cultures to
think, even for a moment, that everyone should magically speak so we
can understand them as soon as they are within our borders.
If someone comes here to work, they are doing something. They are, by nature, a part of society. They have a story, one which deserves to be told, and added to our own heritage.
To people that have lived here all our
lives, check your own lineage. A lot of you wouldn't be here if
immigrants weren't allowed, especially if they didn't speak English.
To people coming here in search of a
better tomorrow, I thank you. More people who grew up in America need to follow suit.
As problems arise in a society struggling with globalization, mass communication, and people being forced to recognize the reality of a bigger Earth than what they see outside their own windows, we need a richer, more varied society to work together to come up with unique and effective solutions.
Last time I was at the hospital, I saw, posted on several walls, a document entitled "Patients' Rights and Responsibilities". It was a overly-verbose way of saying you have the right to treatment coupled with the responsibility to pay your bill. I thought that was a very good way of putting something. You have a certain right, and with it go certain responsibilities.
I started thinking about the Bill of Rights, and that it needed a "Bill of Responsibility" to compliment it. It's been circling the vortex of ideas in my head for some time. People who label themselved "Gun lovers" sparked it, but once the concept was there, I saw that it applies to all rights.
Americans love their rights, but not all respect their responsibilities. I do NOT favor "Takin' our guns", but people who post things online against gun control are really hurting their case. People insist on taking loaded weapons in to where a public official is speaking, just 'cuz it's their right. No matter that you plead for guns to defend yourself and family, but the Secret effing Service is there! What makes you such a special person?
People post pictures of a sign basically saying "Hey, violate my neighbors. It'll be funny 'cuz they don't have guns! I do, so don't mess with me!" That is stupidity in it's raw form, there. Burglars tend to avoid your house while you're in it. But, you did tell them to go for your guns first. Then, if you do get home, guess where your guns are? Pointed at you.
All the same, people laugh at this callous disregard for safety and human life. Not to mention, just come off like a bunch of trigger-happy morons that should have their own island, away from society in general.
I know people aren't like that, for the most part. Just the loudest ones. People do go to extremes if they feel their rights are threatened, even if it's imaginary. Did you know, for all of Obama's "Comprehensive plan to take your guns" - I didn't make this up, people believe it - The only gun laws he's signed actually allow more freedom, like carrying a loaded weapon into a National Park.
I spent enough time on guns, let's just go down the list.
1. Freedom of speech, Press, Religion and Petition - You have the right to say what you want, print what you want, believe what you want, and call for action by your elected representatives if you want something changed.
You have the responsibility to think before you speak, really think, research before printing, Accept that if you have your right to believe what you want, so does everyone else and make sure your petition is a good thing for all, not just you wanting your own way.
2. Right to keep and bear arms - It specifically mentions the potential need of a citizen's militia, in turn, citizens will have the right to arm themselves. A government that wants too much control will try and deny these rights if it foresees a civil war, or another Revolution.
You have the responsibility to store guns responsibly, use and care for them responsibly, to show people you're not a trigger-happy moron who wants to fire his guns just because he can.
3. Quartering Soldiers - No one can force you to house a soldier. If something awful happens, and our soldiers have to fight on home ground, be nice and let one stay with you if it's needed. This amendment really hasn't had too many issues over history.
4. Search and Seizure - No searches without good reason. You have the right to say no to a search of your property or person. You have the responsibility to let them in when they do have a warrant.
5. The Rights of Persons - You have the right to keep your yap shut if it might get you in trouble. You still have the responsibility of not being a lying douche.
6. Right to a Speedy Trial - You have the right to have your trial as quickly as possible. You have the responsibility to realize there are other people in this world, and some got in line before you.
7. Right to a trial by jury - You have the right to a trial by a jury of your peers, if you think you deserve a "Hey, guys, be bros" type of case, that isn't black and white. You have the responsibility to nut up the rest of the time, no matter how much you don't like it. Speeding? Yeah, you went fast. Pay your fine and think about amendment #6.
8. Excessive bail, cruel treatment. - Again, you will be punished, but the punishment should fit the crime, but only up to a point. You still have the right to be treated as a human, no matter what you do. You have the responsibility to just not go there. Don't be Manson.
9. Rule of Construction of Constitution - Constitutional amendments grant rights, not take them away. You have the right to propose new amendments to guarantee certain freedoms, and never to take them away. You have the responsibility to realize you can't add an amendment to take away the right to marriage for anyone. Seriously, guys, it's right there. You have the responsibility to realize that even if you don't agree with something, other people get the same rights as you under the law.
10. Rights of States - The constitution is what covers the US. Anything not there, States have the right to pass laws on. The responsibility is to do what's right, not always what's popular to a local, loud few.
Watch this, then watch C-SPAN. You'll swear you're high.
I'm getting a little sick of the "Keep the 'Christ' in Christmas" and "I Won't say 'Happy Holidays' at Christmas" along with something that makes it sound American.
Is Christmas the only holiday people are allowed to celebrate? People are not "afraid" of saying Christmas, or Thanksgiving, or New Year's, or even (C)Hauna(k)ka if people ever finally agree on how to spell it. "Happy Holidays" is intended to unify the whole season, and take into consideration the variety that makes us human. It's almost like well-wishing others, and having goodwill toward... someone. It's a good spirit that at least one of these holidays should adopt.
No one is trying to take away your gun cabinet full of American flags. We as a country are more than "people can only celebrate what I celebrate, and only for the same reasons I do.". How is it wrong to want to include your fellow man just because he may not get you something for "Christmas".
Besides, how embarrassed would Jesus be? Or do you think Jesus would also be spamming facebook with "He didn't come to my birthday party, he can't have his own party."
Tired of change, and lists, and the ticker that facebook threw on you at once? Ready to go to Google+? You may be, just make sure you do it the right way.
Get used to lists.
People mention facebook taking a cue from Google+, in that lists have become more dominant. Many people's frustration with facebook is not controlling who sees what. This is more obvious now, but it has always been an issue. It's just plain responsible, when you are in a few social circles, to separate groups of people. They don't all want to see your game posts. Maybe you don't want your creepy ex looking at pictures of your kids. Learn to use lists. Take control. Google+ makes that EASY. If I try to tell you how easy, it'll sound harder than it is. Try it in facebook. Sometimes control is all you need to feel bette.r
Don't admit defeat.
Take a little time and sample the new features given to you. You may like some of them. You may not. No matter where you go on the internet, new features are an inevitability.
Change your browser.
You don't even have to change. Download Firefox, install it, and when it asks to make it your default browser, say "no". Use it only when you want. Get used to it. IE is notorious for bugs and security flaws. That can ruin your experience anywhere.
Drop your toolbars.
A toolbar is one of the worst things you can do to your browser. No matter where it's from, it intercepts code, tracks your browsing history, and steals money from sites you like.Visiting a nonprofit that relies on advertising revenue? Not from you. Toolbars will take an advertising banner, and replace it with one of their own, on the page, without your knowledge. That .02 per click going to "Save Kids from Evil Clowns" is now going to the people who made your toolbar. Not to mention, there's nothing from keeping any toolbar from storing your passwords to sites you use, and spamming your friends.
Bottom Line:
If you're not tech savvy, sudden change in unfamiliar territory is daunting. Take a look at your TV remote. Think of going back in time 20 years, showing it to your past self, and saying "This is what we'll need to watch TV.". Then tell yourself you can do anything. If you have a complaint or suggestion, use the site's "Send Feedback" link. Try Google+, but realize change will come there, too. Having all the control you can is important online.
We all use facebook. At least, enough of us use it so I can more or less safely assume that you use it. In the name of innovation, FB has updated some features, the layout, and it's confusing as hell if you're not prepared. Most people use it for a quick game or to check on people at a distance. There's nothing wrong with that. You just need a geek pal (like me) to help you when it gets too technical for your taste, or time contraints.
Ticked by the ticker?
This is probably the single biggest source of complaints and fear. It posts EVERYTHING! How do I keep it from telling everyone everything I do? The simple answer: If you don't want people to see it, don't put it on facebook. I'm not being as hearless as I may sound. The ticker updates anything you'd normally see on a friend's page. There's nothing new or scary about what's going on in the corner, so breathe a little easier. If someone wants to see what goes on in the ticker, all they ever would have had to do is click on your name. That being said, how do I rid myself of this new thing?
1.) The easiest way - shrink it. There is a seperator bar at the bottom of the ticker that blends in so nice, you hardly know it's there. Click it, drag it up, shrink your ticker to ALMOST nothing. It's not perfect, but it may be enough for you.
The little bar can be slid up so as to make it ALMOST go away.
2.) Plugins are your friends. Go to http://www.fbpurity.com. They make their plugin for Chrome as well as Firefox. I don't think Internet Explorer will allow it, however. Yet another reason to make the plunge! As of the writing of this, the newest version of Firefox is the fastest, most stable, and most lightweight browser - not to mention secure. Anyone who reads their windows updates will be bombarded by updates for IE that says "fixes a bug which could allow an intruder remote access to your computer." - ALL THE TIME. Ditch it!
FBPurity will (once you refresh your newsfeed) allow you to completely remove elements from your facebook view. Suggested friends, pages, even the TICKER. Ooooooh. But it's a clutterf$@!k! (see that pun?)
This may be the simplest, yet most involved fix. Change your browser. Google Chrome(tm) users will notice a lot more clutter in the center of the screen, the old chat thumbnails on the left in addition to the chat sidebar on the right. I was so very confused when I woke up to facebook ablaze with comments about how different, and how messy the new look was. I didn't see it. I use Firefox.
A friend of mine had an open debate with me - something other than "It's new, it sucks" that I try and drown out. I got to thinking Chrome uses a different Java(tm) engine. I checked. I almost threw up in my mouth a little.
This is what Chrome showed me:
It's safe to click if you want to see it bigger.
This is what I had been browsing, nonchalantly, in Firefox:
Click. Make it bigger. Compare.
If you make the leap from Chrome to Firefox, but don't want to sacrifice the comfort of Chrome, take a look here. A small upfront time investment, you have CONTROL over your browsing. Sounds nice, doesn't it?
By the way, if you're make the leap from Internet Explorer to Firefox, and don't want to panic, go here.
Take a tip from Santa. Make a list, check it twice.
This may seem like a daunting task to the uninitiated. It's not that bad, and it gives you the privacy control you so greatly want, and deserve.
This is something you should do if you have a lot of friends in any case. You can control who sees what. Even in the ticker. If you don't already deal with lists, there is a LIST section on your left-hand column now, with some suggested, pre-made lists. Play with those later. Click the "MORE" that comes up when you move the mouse over the word LISTS. You can create a new list by clicking the button I pointed to.
A window will pop up asking you to give the list a name. Whatever you want. Then, a screen to select your friends for this list. Select, for now, the people you want updated every time you do something. That's it. you have a list. You can go back to the lists menu and change it anytime. Ooooh, power. Are you dizzy with it yet? Just wait.
NOW, on the top blue bar, by your name, and home, there's a little down arrow. Click it. Select "Privacy Options". You will be brought here:
Magic. It really is.
We are changing your default posting preferences here. Click the dot under "Custom", select your list, and then, unless you say otherwise, those people will be the only ones who see what you do, even on their ticker.
You are welcome.
Change.
Change, especially in the digital age, is inevitable. It's how we progress. We don't have to like every single change, though. We do what we can with what we have, and I'll share anything I can to make things easier on you.
If you read my posts on any social networking site for a certain amount of time, you are sure to get my opinions on copy-and-paste status updates. I think I should explain, so I don't just sound like a dickhead. I may still, but not "just" a dickhead.
Most any time someone writes a message to copy and paste, they don't care about a cause. They want to see people re-posting the message that they originally wrote. It makes them feel special, I guess. Copying and pasting words that aren't even your own - "Even for one hour!" - Is rubbish.
A lot of times, it's in good fun - "send me a number I'll post something I think about you" or any number of lighthearted thingies, is NOT what I'm concerned with. CAP (copy and paste) messages don't help spread cancer awareness. Who is going to read facebook after all this time and HAS NOT been affected in some way? Will someone read and say "Wow! I didn't realize cancer was actually a problem!". It doesn't happen.
We have ALL lost loved ones. Any of us with children know what it's like to love your kids with all your heart. Posting someone else's words is not only inflammatory - by implying your "true" friends will blindly copy and paste, but it's disingenuous. You love someone soooo much that died horribly from cancer, at war, you name it, and you can't even take the time to formulate your own thoughts about it before you go back to Farmville?
I've lost my mother to cancer, my grandmother to a stroke, my grandfather to smoking. I have very good friends I worry about daily because they are in the military. I have not reposted a single thought by anyone else about any of this.
Remember Jesus? I do. I read the Bible. I can't say I'm a Christian, but a lot of these facebook sites shouldn't say they are either. A true test of faith is not clicking Like because a post says "If you're a true Christian click like! Let's see how many TRUE christians are on facebook!" If you've read the New Testament and are NOT offended, re-read.
You want to be a Christian? You want others to be, too? Be a better person. Be an example.
The same applies to the messages people copy and paste. They mean well when they do, but It's hard to take you seriously when from post to post you go from "Kill our black leader because he said the same stuff I said before he was elected!" to "I'm eating sushi" to a message that isn't even heartfelt, but copied, and pretty much calls everyone else a dink.
You want to do something to help cancer? Volunteer. Donate. Join a group. Put something IN. You have a kid with autism? Awareness is needed, but everyone who knows you on facebook probably knows something about autism. You want to help put awareness on facebook? Put up something unique. Something from the heart. Something that makes your story personal.
Paste.
Facebook is (gasp!) a social networking site. Be social. Enjoy the friends you have. Share what you need to, read and learn about what your friends might be going through. If you just want to [CTRL+C], [CTRL+V] so you can act like you care and get back to asking people for imaginary nails, just go to the imaginary nails.
No one will think less of you for enjoying your time.
"Where's the 'kaboom'? There was supposed to be an Earth-shattering 'Kaboom!'!" -Marvin the Martian, Looney Tunes.
The "End of the World" has come and gone many many more times than I want to count, according to prophecies. Some people get upset at each one, but no one seems to believe them all. Then there's a part of us that wants to believe outwardly, because it's exciting and we get to see it. Inwardly, we know it's not happening. That's why people can live their daily lives when they think everything's coming to an end.
Once in a while, mass hysteria becomes mass stupidity.
Y2k
If you know me at all, even if you didn't then, you expected this on my list. The theory was that computer clocks had a two-digit year, and no room to go after 99. People (none of whom understood how electronics worked) further speculated that if the clock's calendar were off, the device would fail to even power up. They went FURTHER to put forth all types of scenarios: power grid goes off line, nuclear reactors shut down and fail, and planes fall out of the effing sky.
I can't even begin to overstate the absurdity of the scenarios. Anyone who has seen any kind of two-digit counter knows that the digits start over. Anyone who thinks about it should understand that the calendar is not even a part of the computer's power-up process. Electronics don't care what the date says. They don't compare to yesterday and say "Heeey... I'm not doing anything until you explain why we're starting over!" - That kind of technology is still years away.
I happened to be in a job involving a lot of electronics and computer repair. I was the one customers were sent to to ask questions about y2k. There was an interesting thing: people were stockpiling food and water, and making sure their devices (including one who asked about her toaster) are Y2k compliant. That became the biggest selling point of VCR's, Vacuum cleaners, lightbulbs, you name it. Which begs the question: if you think the power grid is going to fail and civilization is ending, how do you use your Y2k compliant VCR?
Interestingly enough, people "in the know" said computers year counters would reset to "00". This was a big warning flag. The truth was, a computer's CMOS(what has the calendar/clock) had default start dates of Jan-01-1980 or Jan-01-1984. The second still makes me smile. So orwellian.
The date came and went, people in general pretended they didn't just participate in that lunacy, and pretended they were never worried.
The Jupiter Effect
As a very young child, I remember hearing about a day when all nine planets were aligned. People I witnessed firsthand decided this would herald the start of a new age, hence the term "New Age" that's slapped on hippie stuff.
Whenever there's an alignment of any sort, people get all fidgety. What does it mean? In reality, nothing. In people's heads, THE END OF THE WORLD.
I'm glad it didn't end there. The date was March 10, 1982. I would have my seventh birthday and watch the premiere of "The Greatest American Hero" 8 days later on our family's 13" Black and White TV. Provided someone wanted to go outside and turn the antenna just so.
Hale-Bopp
The first big one that really got a kick from the Internet. Again, March. The year:1997. A comet was visible to the naked eye (Hale-Bopp comet) for 18 months. That was kinda neat. Some amateur astronomer spotted a companion object in the comet's tail. People on the internet took some surreal twist of logic to conclude it was a spaceship, and Earth was to be obliterated. The Heaven's Gate cult committed mass suicide because they thought the spaceship would take them to paradise if they left their bodies behind.
Hometown Pride! This one is my favorite. The town I grew up in, Farmington, Maine, was to become the "New Jerusalem". God had apparently said no one within the town lines would ever get sick again, and all ills would be healed. So glad God respects local regulations.
The original prophecy sign rented out.
This woman, who happens to be a Quaker, claims to channel Christ through her body. She says she sleeps, and Christ takes over, giving her a prophecy, even a novel.
Her original date of 06-06-06 came and went. The sign changed:
No caption needed.
I really like this one, though. It's the only "End Times" prophecy that is remotely hopeful, and if you read what the woman wrote, she seems very sincere. Of course, the town will always be special to me. MY hometown.
Honerable mention: 2012
Honerable mention? Yep. There is no "Mayan Doomsday" prophecy. People were learning about the Mayan calendar, and posed a question as to why it ended on that date. Speculation from doomsday freaks or people writing books to get some quick cash decided to answer the question.
Meanwhile, while people who actually did research realized the Mayan calendar counts backwards, and the date given is simply "New Year's Eve" by that calendar. It is also only one of five countdown calendars the Mayans used.
"Where do we go from here Now that all of the children are growing up?" -Alan Parsons Project "Games People Play"
I saw the shuttle liftoff for the first time when I was 6. Little did I know that it was the first shuttle liftoff. I'm at the age in which the shuttle has always been the way to get to space, And seeing old Apollo launches with more traditional rocket-shapes brings thoughts of old, bad sci-fi movies. In July, the last-ever shuttle launch and the end of an era is upon us.
For years I was disappointed. People walking on the effing Moon were before my time. Why are we spending our time in orbit? Then came Hubble. My dreams weren't limited to seeing people on the moon, or on Mars, or even where people go entirely. The universe, and how much we can learn, and how amazing what we learn is, were the boundaries of my dreams.
Hubble was a miserable failure. They went back to not only fix it, they made it better. We can now see the edge of the Universe. The beginning of all existence. The images weren't as pretty as our more local Nebulae, But the beauty of what it means to be seeing the edge of the Universe. People have an innate need to know Why am I here? along with other questions people like to write nonsense that sounds good for now about. Seeing remnants of the Big Bang, the singularity from which everything came, helped me understand hippies. I felt like I was at one with everything. That goes along way toward having an understanding of our place in things.
Technology exploded. Things got smaller and more impressive, in part from things learned from all these experiments in space no one every bothers to know about. We can see smaller. We've got subatomic things on film, breaking laws like the speed of light and time travel. At a certain size, the laws of physics break down, and new ones take over. You can be in two places at once. You can be doing different things at the same time. Things only become "real" when observed. This lead to even more bizarre erratic behavior when you go smaller. The smallest point of existence is a quantum string. These can vibrate 6 ways in our three perceivable dimensions, plus apparently 8 others. (11 dimensions). This lead to the edge of understanding the nature of existence, and it blows my mind:
The basis of everything is tiny strings that vibrate in certain patters. Exactly like our musical notes. The universe, time-space, everything, is an amazingly intricate Symphony of incredibly epic proportions.
Understanding how small we are didn't make me feel insignificant. Every moment of our existence is a note in a Symphony of nearly infinite complexity, and no one note is more or less significant than any other.
Humans have really stepped it up for one of two things: Exploration and Competition. We've advanced tons just in my own lifetime as our world and our part in it change. As a species, we like to know more, to add to our own lot in things. We find more of what there is so that we in turn have more, or we compete with others over what's there. Wars, the ultimate competitions, force us to improve and adapt. Just as much of what we take advantage of in our lives is from military research as it is the space program. Competition and Exploration, respectively.
Where am I going with this?
The next step in space has already started. The privatization of space travel and research. People taking what's there for research, and improving on what's there for efficiency, driving the cost down to where space travel can be sold as a commodity. SpaceX winning the first ever "Space Prize" made me realize that we are on the edge of something big. There is even competition. Two companies.
Normally, I'm not rooting for "The Corporations" any more than I am "Tha Gummyment". The government can get things done on a big scale, but they are criminally inefficient. Big companies want big bucks. This leads to bad things, but I think only when they run out of ideas. Space is so huge, there is going to be no end to improvement and new research to out-do the other guy, as much as make their own products more accessible and profitable. That's a motivation that will force at least these guys to do for the consumer for a loooong time.
I see SpaceX and Virgin Galactic one-upping each other on what their ships can do, and NASA continuing development of the space elevator. You heard me right, at least if you read out loud.
Graphene is a super-strong, super-light, nano-engineered form of carbon. There is to be a platform in fixed orbit around Earth, attached to the ground by a material like graphene. There will be an elevator that can ride this tether all the way into space, cutting costs from thousands of dollars per pound to about $150. Launching to space from the orbiting platform will be much easier and cost-effective.
There's a huge amount of what we don't know out there, it's amazing just to learn some of the stuff we never even realized we didn't know.
My middle child, Campbell, taught me what it's like to love someone so much it hurts. Her smile and laugh make me believe in magic, and one can't help but feel happy when she does.
She was diagnosed with Rett Syndrome, and as of yet cannot walk, or speak. She has, over the last year and a half, started having seizures. There is nothing more painful than watching her seize... She doesn't understand what is happening, and the look of fear on her face absolutely kills me.
She loves holding my hand. If she's napping, and wakes up scared and disoriented, she'll wrap her fingers around mine, and look at me for comfort. That I can do that for her makes me feel like Superman.
Recently, There have been breakthroughs in Rett Syndrome, including reversal of Rett Syndrome in lab mice. Human clinical trials are starting as I write this, and I'm chomping at the bit.
That's what you need to understand to get why this dream was so powerful.
I dreamt she had been accepted into the first phase of the trials, where all the children get the drug to see how well it's tolerated. In the dream she had been in the trial for three months, and was showing more control of her muscles. It was my turn to inject the drug. The needle was cartoonishly huge, and I had to inject it deep in her leg. It looked like it would go all the way through.
I winced as I drove the needle into her tiny little leg, expecting her to cry out in pain - I wanted to. She apparently understood the drug was helping her, so she made a little face at the initial injection, but gave me a huge, comforting smile.
I will talk politics somewhere in this entry. I think that's a MUCH more important warning than "May contain foul motherfucking language and crude god damned subject matter"
Both are applicable, but I'm trying to prioritize this kind of shit. I'm in one of those mental place where I'm trying not only to organize this crap in my head, but to really take it to heart.
If anyone is offended by such content: Make a fucking law against it, shit-for-brains.
Nobody ever read my shit on MySpace, so I've gotten used to no one reading. These things work like my own internal monologue, as I'm pretty much talking to myself.
People in masses tend to be stupid. I wanted to say sheep, but sheep are passive. People work waaay too hard at group douchebaggery to be classified as such. And I think I just invented a new concept in porn.
I think this comes in cycles, like sunspots, but people are forwarding some way stupid shit. Be it facebook, email, text, it's on the rise again. If a message ends with "re-post this if..." or the statistician-verified "93%/99%/82%" etc. "Wont re-post this!" Or anything insisting everyone on your friends list will be sooooooo glad you did because you'll be the first person ever to forward that message to them... don't. Just don't.
Someone, somewhere, who is probably way too old to still be living with mom, but does because she cant take care of herself after the stroke she had from the realization she was even stuck with you the first eighteen years(after dad took the easy way out; suicide), and gets a thrill out of seeing people send his shit back to him, never knowing it was him all along....
That is how the chain-post-starting mind-frame is started. Am i the only person offended by the chain posts that try to guilt you into re-posting? That's fucking sick. Guess what? My mother died from cancer when i was 14. She was my best friend and it kills me every day to think a woman like that was taken in such a horrible way.
You know what? I was in the 93% of people who "wouldn't re-post this" if they wanted a cure for cancer. Who on Earth wouldn't want a cure for cancer? People dedicate their lives working for a cure if it's research, funding, or even simple footwork. But a condescending forward on your facebook status for one hour is all you need to feel like you're helping? You're helping lives-with-mom talk to himself vicariously through facebook.
There's the more recent warning about a group started by pedophiles. I feel really bad for a couple of reasons: this is really easy to think you are protecting your kids and your friends'. No one can view your photos if they're private. Even if you are a member of their group. If you want to help your friends' kids, tell them the pictures of them acting like whores and doing drugs should be in SEPARATE folders from the kids. Grrr. Fucking grr.
The second, when this rumor started, there was never a group with that name. Since then, who could have wanted to start a group with a name like that for no other reason than their children make them know what it feels like to wholeheartedly love another human being so much in can make you cry? And then to get hate email from hundreds calling the person a pedophile?
All i suggest on that, is before you forward, copy and paste a single sentence of the post into the search at snopes.com
Even NPR seems to see the stupidity inherent in the masses. There was a "news story" stating some people think Obama's a muslin, some people don't. For once i was impressed. NPR seems to have more facebook posts intended to start moronic "Comments" arguments. This time, a vast majority stated npr should report news and who cares. Thank (insert prophet/deity here) for that response! Unfortunately, like the rest of life, the dumbest are the fewest and so feel they must be loudest.
People are offended by a "mosque at ground zero". Its actually a couple of blocks away. Notice the tense: is. Its there. They want to expand what they have in a building they own. And have been there waaay before there was a "Ground Zero".
Also, at the very least, note the spelling of mosque if you insist on being dumb.
You have the right not to like it. Its part of the "freedom the terrorists want to take away". So by trying to ban a place of worship, the people who are in opposition are taking away freedoms.
If the mosque is not allowed or tolerated, guess what? The terrorists fucking won.
Sure, you may argue, its radical Muslims that blew up the WTC. Guess what? Radical Christians were responsible for the Witch Trials, Crusades and the Spanish Inquisition. You should start opposing churches in Massachusetts and Europe.
Get a dictionary, Look up "radical". If that doesn't help you understand, put down the "my furst dikshunarry", get a real one, and beat yourself with it.
In the meantime, be a vegan because you're a humanitarian, while not worrying about how many laborers, child and otherwise, endure tremendous mistreatment for little to no pay for the most basic of consumer goods you never give a second thought to. Just think enough about something to feel better about yourself.
is a neurodevelopmental disorder affecting gray matter. The clinical features include small hands and feet and a deceleration of the rate of head growth (including microcephaly in some). Repetitive hand movements such as mouthing or wringing are also noted. Girls with Rett's Disorder are prone to gastrointestinal disorders and up to 80% have seizures. They typically have no verbal skills, and about 50% of females are not ambulatory. Scoliosis, growth failure, and constipation are very common and can be problematic.
The signs of this disorder are most easily confused with those of Angelman syndrome, cerebral palsy and autism.
Rett syndrome is a severe, genetic disorder that affects the way the brain develops. Occurring almost exclusively in girls, Rett syndrome produces symptoms similar to those of autism.
Most babies with Rett syndrome develop normally at first, but their progress often slows by the time they reach 18 months of age. Over time, children with Rett syndrome have increasing problems with motor function that may affect their ability to use their hands, speak, walk, chew and even breathe.
The above is all true. It gives you symptoms of Rett Syndrome. The definition, even clinical description, can't convey what Rett Syndrome is all about.
My girl, Campbell, was born October 31st, at 11:53PM in 2007. She had problems from the start with her oxygen conversion. It was scary seeing my child have her hands lifted up, and dropped lifelessly. Then came the tubes. 11 days in the hospital, and then she was ready to come home.
She was a very content child. She was always happy, unless she needed food/drink/nap/changing. A very exuberant girl. She had quite the personality.
After a few months, we started noticing she wasn't hitting any of her developmental milestones, like rolling over, crawling, walking, socializing. For the first few months, we weren't concerned. Her overall health was good, and she was happy. Then the time came, a point of no return, when we were forced to acknowledge something was wrong. Not knowing what it might be or what it could mean puts some unpleasant thoughts in your head, let me tell you.
Her mother made an appointment with a doctor to get a genetic test done. Lo and behold, The results came back - R270X mutation: A form of Rett Syndrome. This is the exact moment the world changed forever.
All of a sudden, one gets to know one's self. There were tears, not because of anything that happened to me, I wept thinking of what it would be like for her. I've always wanted her to have every opportunity in the world. There were some selfish thoughts, too. I looked at her and she's smile, and part of me took comfort that this precious little girl would always need her daddy.
She was enrolled in physical and occupational therapies right away. After two months, she was able to hold herself up on all fours - "quadruped position". I didn't expect it, but I certainly didn't expect what happened next. This is one of those moments you wish your whole life you had a video camera handy. I had just that. Watch her - again, she had never so much been on all fours on her own before. Always sitting or laying down.
She was able to stand on her knees! reading the definitions above, knowing 50% of these girls are non-ambulatory, for her to make such progress so quickly, and to be in such good spirits throughout, it was a ray of hope that nothing could dim. The look of delight on her face was certainly contagious that day.
Developmental and speech therapies were soon added. At home, we also were able to get in-home habilitation specialists to work on therapy goals, and keep things consistant.
Rett Syndrome is a condition in which the protein that forms around synapses in the brain to protect and solidify them isn't produced properly. This lack of MeCP-2 keeps the brain in an immature state. We know how to move our hands, feet, arms, legs and whatnot, because the use of the muscles makes a connection in the brain. The more we use the same muscles the stronger the connection gets. The MeCP-2 protein covers this connection, to keep the connection in place, so we don't have to consciously think about how to move each individual muscle any time we move. The use of the muscles is learned. In Rett Syndrome, girls do not adequately produce this protein, so rather than atrophy, the synapses in the brain remain in an immature state. Always eager to learn, but not always able to hold on to what is learned.
We read of a study, the results of which were published 3 weeks before Campbell's diagnosis, in which laboratory mice that were given the genetic code for Rett Syndrome were injected with IGF-1(Isulin-like Growth Factor) to see if the molecular chain could compensate for the lack of the MeCP-2 protein. In
laboratory models, over the course of 3 years, the symptoms of Rett Syndrome had been reversed.
This was exciting news, yes, but there hasn't been a single neurological disorder that could be reversed in human history. But there it was - in mice.
I checked the article, and by finding the names of certain people, we able to locate the hospital that plans on conducting these clinical trials with IGF-1 in humans. I made contact with the people, and we are currently waiting on the start of the trial. Campbell has an excellent chance of acceptance - Can go to Boston once a month, she is the right age (2-14) and her mutation ends with X. There's a reason for that. I'm not going into it, but trust me.
We saw Dr. Omar Khwajha in Boston, he was part of the team that identified the genetic cause of Rett Syndrome. He had some street cred. The appointment was simple - driving through Boston was not - after looking at Campbell, he said she's very mild symptom-wise. Also, that she should be walking within 1-3 years, and that is her best hope to fight off scoliosis, which is typical of Rett girls.
You've gotten the abridged story so far.
But WHAT is Rett Syndrome?
I watch Campbell playing and enjoying herself, and it makes me smile to no end. Lately, she's been more fussy than usual, and it puzzled me for a while. She had been so happy. Then it hit me like a load of bricks: Her brain is fully functional, but the muscular control is lacking. She's frustrated. She wants something and doesn't know how she can express her wishes.
Rett Syndrome basically takes a child away from herself. She wants to say and do so much, but the motor function isn't there. It's like being in a nightmare where you can't scream, but it's real. And it's for life. This little girl with hopes and dreams she's currently unable to express. Kills me to think about, but there is hope right around the corner.
For more information on Rett Syndrome, and stories from more parents and children affected, go to http://rettsyndrome.org
TO DONATE TO RETT SYNDROME RESEARCH ON BEHALF OF CAMPBELL, CLICK HERE
"Opinions are like assholes. Everyone's got them."
Democrats saying Republicans are just being difficult. Republicans calling Democrats Nazis and Socialist for wanting to the the little guy just a bit more power with health insurance companies.
I'm stunned over the misinformation from both sides on this issue. We have the extreme right talking about coverage for "illegals", "death panels" and "rationing" of health care. We have the extreme left trying to sound like this is an instant fix for all of society's woes.
Real health care reform, if by health care, we mean health insurance, not the actual care, would need to be much bolder. Like making health insurance compete like other industries do. Health insurance companies are exempt from antitrust laws, and redlining, as well as price fixing is perfectly fine in their industry. Take those luxuries away, and those motivated by profit will have to work harder for the consumer - better pricing and benefits - to get the consumer's money.
The bill is a very small step in the right direction. It addresses some things that have to be fixed before much else gets done, and sets precedent for more citizen-favorable legislation. No pre-existing condition clause, and no cap on care. AWESOME. People won't be afraid to get preventative care and drive the expenses down, along with overall cost.
The bill specifically excludes people in this country illegally. Saying otherwise gets people angry, but it is an outright falsehood and unproductive argument.
The "penalty" of $625 a year if you don't get insurance is to offset the fact people who don't get insurance by far have more emergency room visits because they wait too long because they don't have health insurance. If one can't afford reasonable premiums, how can they afford hundreds if not thousands in unanticipated medical bills? A lot of this doesn't get paid, and goes back to the taxpayer. Not having coverage costs more tax money, so it makes sense. Guess what else? $625 is maximum. It's tiered or even waived outright for people making under $40k.
If starting the process of taking care of human beings properly is in any way what Hitler wanted to do, I really have to re-read history books.
The arguments against that make any sense are 1) cost and 2) it doesn't do enough. Cost is speculative at best, and years of research, not to mention common sense, indicates preventative medicine will lower cost and increase productive quality of life. No bill as the first healthcare change in decades could do everything at once, nor should it. It will take time and patience. The system hopefully will adapt, people can be more productive as we work towards the rest of the changes that are so badly needed.
Supposedly, we're fighting a war against "terror". Fear. A vague concept, rather than specific individuals. Of course, we know the names of people we're looking for, but if we leave it at "war on terror" we can wreak havoc on whomever we choose.
A war on terror would likely mean bomb anything that scares us. Spiders, the dark. But our media driven society is fueled on fear. Nowhere is that clearer than with the local news... "How you're going to die... tonight at 6!"
Even worse, the WEATHER reporters are trying to frighted us. A certain local TV channel now calls it's weather report "First WARNING weather." It's funny in the springtime. It's gonna be nice. YOU'VE BEEN WARNED! They have this technology called "live doppler radar" which they mention every 6 seconds in their ads (I timed it). Apparently, this technology may one day be almost as effective as looking out the window. "Other stations" they go on to say, "have information that may be up to 5 MINUTES old. Why trust information that won't keep you safe?" A good point, if said information is "DUCK!". Other than that, I can wait 5 minutes.
