Perhaps Ignorance is Bliss afterall

I've been thinking lately about Cece. She was just three. If you look at the Facebook page you see the wild curls and freckled face of a three year old. Unless you read further, you have no idea you are looking into yet another death from SUDEP. You have to read the page for the tears to start.

Cece had Dravet Syndrome. So did Reed. He was not quite 2 years old when he died. Dravet Syndrome is just one of the 40 different forms of Epilepsy.

If you don't know about it, it really is not so scary to know that 3 million Americans have Epilepsy.

If you don't know the whole truth, it's easy to walk away from stories and think "Phew, it's not my family or my child."

Once you know the truth however - every name, every smiling face, every one of these unexplained deaths by Epilepsy will rip out your heart. Put yourself in the shoes of these families, and the sobs grow stronger.

The truth is that no one knows why some people develop Epilepsy and some don't. The truth is, that even if your 4 or 12 or 27 year-old child has never had a single seizure in his or her life, by this time next year, you could be in the middle of this nightmare. Research cannot point to a cause for most cases of Epilepsy. So there's no way to say: "If you do this - or if you don't do that" you will never get Epilepsy.

My son asked me once "Will I ever get epilepsy mom?" There is only one honest answer: "I don't know."

There is no way to know that you, your spouse or your child won't have this condition next year - or even next week. And once you get it - the whole truth is - there is no cure.

And there is more, even harsher truth. If you develop Epilepsy and are one of the lucky 2/3 who can control the seizures with medication - there is no way to know when or if it will return. And sometimes the return is deadly. SUDEP is Sudden Unexpected Death in Epilepsy Patients. It's a fancy medical euphemism for "Oh Hell, we don't have a clue."

6 weeks after learning of the death of Danny Stanton, I heard a teacher say "Well, it's not like you can die from Epilepsy." And I began - 50,000 unexplained deaths annually from Epilepsy haunt me. Danny, Cece, Piper, Abigail, Chelsea, these are just the ones I know of - I want SUDEP to bother everyone - so if given the chance - I will tell you about it.

I will tell you Danny's story - and I will likely cry.

Lastly, I will tell you about my niece, Jennifer. She has Dravet Syndrome, just like Cece and Reed. Dravet is a catastrophic diagnosis. There is no hope for outgrowing seizures, and little hope for controlling them. At 4 years old, Jennifer was on a steady regimen of dangerous medications and had already undergone major brain surgery. She has a pacemaker implanted in the base of her brain. And still, trips to the ER for uncontrolled seizures don't stop. At 5 years old she began to turn blue during her seizures, and more than once her mom (my sister) had to administer chest compressions to her little girl while waiting for the paramedics to arrive.

So if you see me - and ask about the purple ribbon I wear, I will dispel your ignorance and tell you the truth. For the Month of November (International Epilepsy Awareness Month) I will be wearing purple - ask me why, and I will tell you these truths. I will destroy your bliss. I will no longer allow children to suffer and die because no one knows the truth and no one talks about it. It's time to know - about Piper, and Danny, and Cece, and Reed, and countless others.

I remember before Jenny was born when I knew nothing about children dying due to epilepsy. I too, believed that epilepsy couldn't kill you. Life was simpler. I didn't cry as much.

But it turns out, ignorance is NOT bliss after all. It's just ignorance, and when it comes to epilepsy, ignorance is fatal.

Get informed. Get engaged. Make a difference.

Time to go...

"Preparing for a vacation is seldom easy. There are about 100 million things
to remember - add a 5 year old, and plan to go somewhere you've never been (so
you don't really know what to pack), and there can be a great deal of stress in the preparation.

One of the biggest problems however, is ME. Because while I am packing and prepping for a vacation, I am already there. I think at some point in my life I did live in the moment. But today I live in the future. And I don't like it. Because in my
future I am already back from vacation and back at the job I don't like, and
back failing at another goal."

Just a minute... was that really ME? Yep, while cruising through the list of unposted entries that sometimes queue up, I came across this most depressing whine. How on earth does one live like that? When (in reality) I have everything I could ever desire. My husband, son, life, love, faith... this entry surely must have been lurking in the shadows all these many months for a reason. Things get lost in cyberspace all the time - but not this depressing piece of drivel. Find the lesson... what does it mean... ??

I've GOT it! How about just this: "Quicherbichin!"

Yep, that's probably it.

A few months (and a different job) later, I wonder how, looking forward to a vacation could have made me so awfully depressed. Luckily, it didn't last!

I sometimes forget

In the midst of the bitching and complaining, of the sighing and whining, I sometimes - no, I often forget how fortunate I am. Once again, I have had to be schooled in gratitude. The problem is, I take no joy in these lessons. The reminders to be grateful always - - and I rarely use the word "always" - but the reminders to be grateful ALWAYS come at someone else's expense.

Today - and for the past couple of months really, I have not been able to get enough 'hug-time' with my 5 year old. Not only do I work too much (yes, at a job I don't like... but you know that already), but he has reached a point where hugs and kisses are generally barely tolerated. If I catch him at a particularly sleepy moment, or right after he bumps his head, he'll willingly take a snuggle and a kiss. But for the most part, he runs away from my affection.

I know this is normal - but it's incredibly bad timing. Because two months ago I began appreciating Nick more - really seeing his smile and committing it to memory. I began holding every last hug until the latest moment he would allow - and I swear - because I am paying more attention now - I can close my eyes and feel his hug wrapped around my neck.

My renewed gratitude comes as a direct result of the pain and suffering of the Stanton family. Danny Stanton, just four years old, died on December 12. This was not a tragic accident - not a careless driver - not a daredevil fall. Danny passed away in the night - safely (or so they thought) asleep in his own bed. No stranger-danger, no boogyman, no one to blame. I don't need to recount the story; several news outlets already have, and I would just start to cry again. Do a Google search for "Danny Stanton." There's a lot to read. Their boogyman was Epilepsy - Sudden Unexplained Death in EPilepsy, specifically (SUDEP).

To my amazement, his parents Mike and Marianne Stanton, have appeared on a few talk shows, been interviewed for the some newspapers, and have started a foundation in their son's memory. Personally, I'd be curled up in a ball under my bed. Through the Danny Did Foundation they are preparing to change the world.

I read about what they are doing - about what they lost - I see the amazing photos of a little boy just a few months younger than mine - and I cry. It is said that God only gives us what we can handle. I am grateful that God knows me for the sissy I truly am.

If you don't know Danny Stanton, get to know him now. He and his amazing family, and his most captivating smile - will surely change the world. They have certainly changed me.

Take your time... Engage Others... Enjoy Life... Danny Did.

Withdrawls from the memory bank

You know how every year or so the treasury department will run a list of names in the newspaper of people who have money they forgot about?

First off, let's just clarify: this doesn't happen to me. Or my husband... or my siblings. In 41 years the best I could hope for is the occasional quarter in the couch cushion, if I'm really lucky the lost $5 bill recovered from the pocket of last year's winter coat. More likely though, I'm the person you're stuck behind at the drive-thru scouring my car for the last nickle I need to pay for my morning coffee.

What does happen to me is the occasional recovered memory - it's not de je vous, but some weird synapse that has refused to function for a week - day - sometimes years.

We all have these moments. Sometimes it's noticeable, because you've spent all day trying to recall a movie, song, actor - only to have the answer suddenly arrive at 2am as you are drifting off to sleep. These struggles and recalls don't really bother me. Usually these are things that I really didn't ever need to remember - but more importantly - things I didn't want to remember.

But cash? Have you ever seen these published lists? There are people who have "forgotten" something upwards of a few grand. If I misplace so much as a $20, you can bet I'm going through every pocket on every pair of pants I own.

My recalled memories are of this second sort: I can't believe I've forgotten them. These are the gems that, as a mom, people tell you "I hope you're writing these down." to which you respond "Of course I am." But being a slacker mom - I'm totally not.

So now - when one comes to me, I'm going to post it here - whatever I remember, how accurate it is - how old it was...

I'm gonna make the memory bank real again.

My first withdrawl:
8 or 9 months ago, shortly after Nick started his new school, he came home one day and - with full audience of mom and dad sitting in the family room his tiny 3 year-old voice announces:
"I want some damn raisins."
Now, to our credit, neither of us laughed out loud or shrieked at him. A couple of jaws hit the ground, but in my version of the story we were quick to recover and I very calmly said:
"I didn't hear you Nick, what did you say?"
He didn't miss a beat: "I want some damn raisins."

Thank you daddy - who dropped his chin to his chest and covered his snicker, leaving me to fend for myself.

"Nick, I don't think I know what kind of raisins those are. Can you tell me what that word means?"

"Yes. It means 'raisins' in Spanish."

"No, it doesn't. Don't say it again."

You know, I can't remember if he ever got his raisins.

What a long strange weekend it's been

Who knew that trying to live life to the fullest with a 4 year old could be so much fun? If you saw my FB status Friday morning, you know we had a heckuva day planned. But as always, the unplanned moments are so much better.

First order of business was breakfast. In spite of my attempts to lure him to an actual restaurant, Nick wanted Starbucks for breakfast. I guess yogurt and a scone are every bit as good as pancakes with whipped cream, right? What should have been a simple breakfast turned into an event when we walked in to see two of Park Ridge's Finest having their morning coffee. (No cop jokes please - I know these two guys and they are great police officers, and PR is lucky to have them... ) but back on topic now -

Nick wanted to say hello, and because they are such good people, they indulged him. They invited him to sit and eat breakfast with them. He ate, speaking only when asked questions (this is NOT like my Nick at all), and simply stared at those shiny badges. When we all left, and they waved enthusiastically after our car, he was beside himself. 4 or 5 blocks later, looking practically love-struck he reported: "Mom, that was so amazing I can't even stop smiling." Now that this story has been saved for all posterity, I will pull it out the first time he runs away from the police, and point out that he used to LOVE the police.

All very exciting for the first hour and a half of the day!

Next, it was off to the library to return Magic Tree House books 15, 16, and 17. Nick very deliberately lined them up in a row for the librarians on the return counter, then RAN to the stacks. He knows exactly where those books are, and which ones he wants to find. Because the CPL has a kid's summer reading club, I started asking the children's librarian questions. Skeptically he eyed Nick and referred me to the "Picture Book" section of the reading club. Until Nick started reading "Buffalo before Breakfast" right then and there. Only then did the librarian point out that on July 30 the parent/child book club will be discussing #21 "Civil War on Sunday." - All things Abraham Lincoln in honor of the 200th bday this year -

So I explained to Nick what a book club discussion was, and the librarians told him "You will probably be the littlest one there." Nick promptly told him "I'm the littlest one lots of times, that's ok." So we took FOUR - (wow, that was a big deal) books home with us, and got through chapters one and two before it was time for.... OUR FIRST PIANO LESSON.

We walked down the alley towards Mr. Shack's house, and I talked to Nick about listening, not talking so much, following instructions, being polite... Mr. Shack is close to, if not already 80. He taught me piano more than 30 years ago. Kind of a neighborhood icon. As we rounded the corner we spotted him riding up on his bike(yep). Nick left my side instantly and bolted to see him. They went in, and I sat on the attached porch - just in case Mr. Shack needed to call the lesson a bit early (one never can tell with a 4 year old). There was no need to worry. Nick impressed us both by playing the opening two measures of Beethoven's Fifth. (Silly mom, I told grandpa later that it was his ninth - - Nick called me out.)

The only moment I nearly laughed out loud is when Mr. Shack made the error of asking Nick if he could do the letters backwards. Of course - in music that only means g-f-e-d-c-b-a. But if you've ever met Nick, you know the ABC's backwards is one of his first, and still the finest parlor trick. He now sings the whole thing to the ABC tune - been doing it since he was two. Mr. Shack listened to the whole thing, then - without so much as a giggle said, "That's impressive, but in music you only need to start at g." I know he was astonished because he mentioned it to my parents on the way to church a couple of days later.

Because Nick is Nick, Mr. Shack gave him a rather unusual first song to learn: Ode to Joy by Beethoven. Turns out Beethoven used all white keys for that one, which in retrospect maybe we shouldn't have told Nick. We came home with a book that had the first measure written down for Nick to practice. As of this writing on Monday night, Nick has figured out the next three measures himself.

So - on Friday - after breakfast with the police (not The Police), a trip to the library and a piano lesson... it was only 11:30 am and we still had a lot to do. The Planetarium was next. Been there with Nick before. I know his favorites - - I thought this would be easy. Who knew Elmo would be there?

More to follow...

Third time's the charm?

There is an interesting phenominon that I recall from my days doing library research for school papers. I don't know if it is, in fact a rule, but I very distinclty remember being taught that if you could find something in "common print" (not scholarly journals) 3 times, then it is considered common knowledge and you need not cite a source. I mean, if I were in Jr. High writing a paper on the life of Shakespeare, would I have to footnote the source I used for his birthday? No. Anyone could find that information anywhere.

If, in today's internet age this is still the case, I am on the lookout for the third source in the following series:

Americans Largely Silent as Their Nation is Systematically Destroyed http://canadafreepress.com/index.php/article/9607

American capitalism gone with a whimper - May 2009, Pravda

The variety of sources is important I think: The conservative Canadian Free Press and the self-described leftist-leaning Pravda. Now, both are editorials - but interesting similarity of message half a world apart.

I recommend reading both - but in case you don't have the time, the universal theme is that Americans are being lulled into mindless complacency buy a never-ending series of government entitlements and handouts. Apparently, both sides of the globe can now see Americans not just as ignorant and rude, but also stupid and lazy. We will buy whatever the government is selling as long as they promise us that we will start getting stuff for free one day.

What do you think?

God Bless Mary Pope Osborne!

Nick was one of those odd kids who one day, with very little warning, just started to read. We thought he had just memorized his favorite books like most kids do, until he started reading bill boards, the back of his dad's shirts and road signs. But it isn't easy to keep a kid like that interested in reading. He was only 3, so his attention span couldn't take chapter books, but he was way beyond board books, and most picture books - adorable though they may be - are meant for grown-ups to read to kids. So we began with the "Easy Readers," which bored him. It got to the point where reading was a forced activity just to calm him down before bed.

I started searching - - after he turned 4 I thought I could get him interested in elemetary chapter books. He did like all the Roald Dahl books, and we read books that had movies also. We read Willy Wonka, then watched the movie (the Gene Wilder version - -Johnny Depp creeped me out - but I digress). We read James and the Giant Peach, then watched the movie. Peter Pan, Treasure Island, Robin Hood, Jungle Book... but I was running out of age appropriate materials (as you can tell by the Treasure Island judgement error).

Then The Magic Tree House began. I can't remember where we got the first two books - if you are the person who gave them to me, allow me to give you a cyber-kiss (smooooch) right now! We are on book #9 Dolphins at Daybreak with no end to the enthusiasm in sight.

Nick can talk your ear off about these books if you ask him too. Jack, Annie, Morgan leFay, Peanut the mouse... Ninjas, cro-magnons, mummies... what he has learned is amazing. AND - because the stories tie into one another, he can remember - and is constantly having reinforced - the ties between the books.

Last Saturday night we had people over... built a campfire, made s'mores and stayed up late. At 9pm (an hour past bedtime) I told him he had two choices: Stay up even later at the party, eating more candy and marshmallows, OR if we went to bed right then, we could read an extra chapter... he picked reading. That's right, Nick chose Magic Tree House over S'mores.... can't get a bigger 'thumbs up' than that from a 4 year old!!!!