A Day 48 Hours in Purple

Well, that was fun.

No, really it was. A little tiring but a lot of fun.

Purple Day officially hit the Annapolis Valley. And it was pretty well received, if I do say so myself. So well, I can't wait to do it again next year.

I did an interview Wednesday morning at 8:10 on Magic 94.9, one of two local radio stations. The host of the morning show was great and kept promoting it all day long. And the other radio station, K-Rock, also did a great job of promoting it. Thanks, guys!

Then I scurried off to ye olde computer to try to put together what I was going to say for my presentation at the elementary school. Kit Kat and I had put her presentation together on the previous Sunday so at least I had something to work off of. But her presentation (including the five public service announcements about epilepsy and Purple Day) was only 10 minutes long. Mine had to be a fair bit longer.

But partway through putting that together I looked at the clock and realized I better skedaddle off to Video World to see if they could do anything to fix the DVD that contained four of the PSAs. The DVD that kept skipping. That made it look as if the PSA was actually having a seizure.

Fortunately they could but they wouldn't be able to get to it for a few hours. As in it would be ready to be picked up just before it was time to head to the elementary school. So I left the DVD there and stopped in at the grocery store on the way home. To pick up two items. Honest, only two items. $62, several bags and precious wasted moments later I made it home and got back to work on my presentation.

Then pack up all the stuff (between the two schools we had over 700 bookmarks and Purple Day lapel pins to give the kids and about 10 folders with epilepsy information for the classroom teachers) into the car, pick up Kit Kat at school, pick up the DVD and off we went to the elementary school.

We only had one class of Grade 5s to speak to but the presentation went well and the kids were full of questions about epilepsy. Made a quick pit stop at Subway for lunch and then it was time to head to the middle school.

I was so proud of Kit Kat. She is a shy kid. A very very shy kid. And although all kids of her age (she just turned 13) worry about fitting in and not standing out of the crowd, I find she really takes it to an extreme. But she had volunteered demanded that she be allowed to do the presentation at the middle school. Apparently some of the kids in her class made fun of seizures and that did not impress her one little bit. I was really surprised when she said she not only wanted to get up in front of the school and talk ... but also identify herself with epilepsy in this way.

Well, get up and speak she did. And she did a great job!

I could tell the principal was impressed when not only did he ask the kids before she spoke to think about what it would feel like for one of them to get up in front of their peers, in front of the whole school, and talk but also after she was done, he had thanked her and made some announcements, he again pointed out what she had done and asked for another round of applause.

I must tell you when I walked in the door around 2:00 that afternoon though, I was wiped. I have been working a lot lately and I am my own worst enemy when it comes to sleep, I just don't get to bed early enough, and after all that running around in the morning, when I finally got home I felt like I could fall over. Fortunately I had an hour before I had to take the Blue Jay riding. An hour to just veg in front of the TV with my feet up.

Kit Kat told me that evening that when she was leaving school later that day she saw that the art club had transformed the bulletin board outside the office into a Purple Day board. When she asked them what they were doing, they said that she had inspired them. I thought that was so sweet.

So yesterday was Purple Day and I would say it was a pretty good one. When I drove about half an hour further down the Valley to my hair appointment, I asked if anybody in the shop knew it was Purple Day. I didn't expect anybody would. But surprisingly my hairdresser did, she had heard it on the radio and her first customer that morning had also told her about it.

And when I went to the bank today I asked one of the tellers (whom I know well) if she knew it was Purple Day yesterday. She laughed and said she hadn't but she had worn purple. And when she walked in the bank, one of the other women was wearing purple and told her about Purple Day.

So I think we did pretty good for our first Purple Day in the Valley. I can't wait for next year. After all, I figure if the Calgary City Hall can have a Purple Day Proclamation Celebration, surely our village can officially proclaim Purple Day too. They just don't know it yet is all.

And, lest we forget, the most important thing of all, Cassidy, hon, you done good!

Cassidy Megan smiles as she is presented with a purple bouquet
by classmates during an assembly marking Purple Day
at Atlantic Memorial Terence Bay School in Shad Bay on Thursday.
Cassidy, a Grade 4 student who has epilepsy, created the day
at the school last year to raise awareness of the condition that she
and thousands of other Canadians have. Since that time, Purple Day
has caught on internationally. (TIM KROCHAK / Staff)

Going Purple ... With Pride

Epilepsy aka the seizure monsters have played a big role in our family's life. For a very long time.

I've written a little bit about our family's experience with epilepsy here. And here. And here. And most recently here.

The Blue Jay had her first seizure when she was 13 months old and she was diagnosed with a "seizure disorder" when she was 2 years old. Despite the doctor passing me a pamphlet from our provincial epilepsy association when he gave us this diagnosis, it was quite a long time before I actually put two and two together. And realized that "seizure disorder" was just another way of saying epilepsy.

It's amazing how huge language is. How it can so easily hurt. Come with so many stigmas attached. Can be used to build someone up . Or tear then down. Sometimes without the speaker even realizing it.

And so it is with the word epilepsy. There's a certain stigma attached. Although it doesn't carry as much baggage as the words "mentally retarded", for some people there's still a certain sting to it. And if you doubt that, try the word "epileptic" on for size and see if you feel any differently. Think of it applied to your son or your daughter. Or yourself.

And so it was understandable that 9 year old Cassidy Megan didn't want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her. Can you blame her?

And yet time and again we have seen that from many dark moments, a light can spring. And so it was when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation. It empowered Cassidy to speak up for the first time in front of her classmates and *admit* (yes, admit) that she had epilepsy. And that by itself, were that the end of the story, would have been admirable.

But Cassidy went beyond that. She realized that people needed to learn more about epilepsy, "especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else". She also wanted kids with epilepsy "to know that they are not alone". And with this realization, Cassidy became a spokesperson for epilepsy.

She went to the principal of her elementary school and asked if they could create and celebrate Purple Day ~ a day when everyone would wear purple to increase awareness about epilepsy. With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them all to spread the word about Purple Day and epilepsy. And with that, Purple Day was born.

From students in classrooms around the world to Paul Shaffer on the Late Show with David Letterman, people wore purple to spread the word about epilepsy on March 26, 2008. Cassidy was interviewed by news outlets across Canada and was even featured in a South African epilepsy newsletter.

I am sad to say that I was totally unaware of Purple Day last year. My loss, I'm afraid. But this year, I am proud, along with my husband and my children, to be a vocal supporter of Purple Day.

Come Thursday, we will be proudly wearing purple, along with (hopefully) most of the combined approximately 700 students at a local elementary and middle school. That's hoping the Kit Kat and I are successful in our brief presentations on Wednesday to explain to the students why Purple Day is so important. And, equally, why it is so cool. And I found out today that I just may be lucky enough to spread the word on one of local radio stations, too!

After all, how can you fail to be be awed by a story that starts with a 9 year old Nova Scotian girl and ends with purple tea parties and pizza parties, purple cocktail parties and fundraising events, purple art shows and pool competitions, a Calgary City Hall Purple Day Proclamation Celebration and a purple-lit CN Tower and Niagara Falls?

On the internet, people like to talk about videos or posts going viral. Might I suggest that thanks to Cassidy and, this year with the help of the Anita Kauffman Foundation, Purple Day has indeed gone viral.

Congratulations, Cassidy. You truly inspire us all. If there was ever a person to prove that one child person really can make a difference, it is you.

And on behalf of the Blue Jay and our family, the 300,000 Canadians and 2.5 million Americans and countless others around the world who live with epilepsy each and every single day, a very heartfelt thank you.

I wonder how many people are aware that epilepsy affects more than twice as many Canadians as those who live with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined or that one in 100 people has epilepsy? I wonder how many people are aware of many epilepsy issues?

Well, thanks to Cassidy Megan, I am sure the answer is many more now.

Those Who Can Do ...

And those who can't have Fox TV shows.

Because, apparently, that's all they're capable of. But that's okay because they're, like, so funny.

'The Canadian military wants to take a breather to do some yoga, paint landscapes, run on the beach in gorgeous white Capri pants.'

We have police officers and they have Mounties.

Our cops ride heavily armoured cars, they ride horses.

We have bullet proof vests, they have wonderful little red jackets that can be seen a mile away. This is not a smart culture.

A barrel of laughs I tell ya, particularly, on the day that Canada repatriates it's 116th soldier from Afghanistan. Just in case their laugh a minute brains can't compute that, we're talking about Canada's 116th dead soldier. 116 lives sacrificed in support of their country's efforts following 9/11.

I suppose we shouldn't be surprised though. Not when one of the first remarks out of one of their astute commenters' mouths was this:

I didn't even know that they were in the war.

How come that one-liner doesn't surprise me?

And no, just because you decided to play nice and apologize doesn't quite cut it. Sorry, but it's frigid up here, eh? And so are we. When it comes to asshats like you.

Point and Counterpoint

The blogosphere is abuzz with President Obama's comment, comparing his bowling ability to a Special Olympics level, on Jay Leno last night.

More noise than light, I rather think. As in everybody loves to use whatever ammo they can find for their own political purposes.

But I heard the comment on the show and at the time I actually thought I misheard. Quite frankly, I didn't think someone in his position could actually make such a 'stupid' mistake. And, in all honesty, being a black man I would have credited with a little more awareness around issues of discrimination and how hurtful the casual, unthinking use of language can be.

But he has 'fessed up and apologized. And even been challenged to a face off by a Special Olympian bowler.

And yet that's not what I really want to talk about.

Except to offer a counterpoint to this, Sarah Palin's video on the subject of the Special Olympics.




I don't care what your politics are (and no, I ain't no Republican, trust me), Palin could well and truly teach President Obama a thing or three on this topic. Perhaps she could offer him a course, gratis like, as a service to the rest of the country.

And lest we forget, best line ever:

What's the difference between a hockey mom and a Special Olympics hockey mom? Nothing.

You pegged that one, my dear. You pegged that one.

H/T to Take Five

Mannerless

A recent post at Kris' caused me to turn my mind to a few different related events.

Kris, you see, recently (very recently) had hip replacement surgery and apparently discovered some of the lower forms of low life while out at restaurant this past weekend.

Oh the stories I could tell ... whatever has happened to good manners?

From the time when my kids were very, very little and I was trying to navigate a stroller through a door at the mall while holding the hand of the Blue Jay and had the door slammed shut in my face to the time when I was seven months pregnant (and definitely looked it) and no one would willingly give up their seat for a three-hour bus ride. Fortunately for me, the bus driver (God bless him) refused to leave until I had a place to sit. That eventually worked.

Are we so caught up in our own lives that we can't see past the nose on our collective face? Do we really have that much of a sense of entitlement that the attitude, recognized or not, is screw the other person; it's their problem, not mine?

I wonder what it would be like to navigate our world on a daily basis as a person with a physical disability? Would I even want to know?

But the best incident, I think, (at least it was amusing) happened a few years ago on my way to work. I was walking behind a guy (roughly my age) as we reached the door to the office building where I worked. Which door he promptly let shut in my face. Needless to say I was not impressed. Fuming inside, in fact, but I didn't say a word and simply followed him to the elevator. Where we waited.

And as we stood there, not speaking, he suddenly turned to me and mused (more or less in a philosophical tone), "I never know whether to hold the door open for a woman anymore or not. Sometimes they get mad at you." I looked over at him and casually replied "Well, I always thought it was just good manners to hold the door open for whoever is coming behind you, whether it's a man or a woman".

Just then the elevator doors opened and I stepped inside. "Oh!", came what sounded like a genuinely surprised response. "I never thought of it that way before."

Indeed. Like I couldn't tell.

Now I am far from a Miss Manners type of gal but I must lament ...

"Whatever has happened to good manners?"

The Last Day of the Rest of Your Life

Can anything be worse than the pain of losing a child?

Personally, I feel like I know a bit about grief and mourning lately. But I can't even imagine, can't even begin to fathom, the pain of losing a child. It's beyond me.

I know of parents who have survived that kind of loss. Who have, in fact, not just survived (which I am afraid might well be beyond my capabilities) but even thrived, managing to transform that tragedy into something amazingly beautiful. Something that helps other children and their families. I am honoured and humbled to count such people amongst my friends.

But imagine not just losing your child. Not just. Like that could not possibly be hard enough. Imagine being accused of killing your child. Imagine being convicted and sentenced for your child's death. Imagine spending the past 14 years in prison.

For killing your child. Incarcerated for 14 years. As you mourn the loss of your child's life. And the loss of your own. Because you know what no one else seems to recognize. That you, too, are an innocent victim. That you could never, you would never, you did not harm your child.

That, you, yourself, are the innocent victim of someone else. The pediatric pathologist from hell.

On Thursday, 14 years after being convicted of killing her two-year-old son, Marquardt was granted bail.

Though the courts haven’t yet decided if they’ll hear her appeal, Marquardt was beaming after being released.

"Today I finally have my day," Marquardt said outside the Ontario Court of Appeal, struggling to catch her breath through her tears. "This is my day. I’m out. I made it."

She was the last known parent who remained behind bars based on the testimony of Dr. Charles Smith. Marquardt was convicted of second-degree murder in the death of her son Kenneth and was handed a life sentence in 1995.

She said she found the boy tangled in his bedsheets, but Smith said he was mothered or strangled.

Marquardt’s lawyer James Lockyer said not only did she not kill her son, but no crime was ever committed. Kenneth had seven documented trips to hospital for seizures, Lockyer said.

Smith’s findings have since been rejected by six forensic experts, including one who said the epileptic boy could have died from a seizure.

"Pathology can no longer determine the cause of Kenneth’s death," Lockyer said outside court.

"There’s every reason to believe that he died as a result of seizures that he’d suffered from all his life."

SUDEP, or Sudden Unexplained Death in Epilepsy, is not only a tragedy, but also, exactly what it says.

The sudden. Unexplained. Death. Of a person with epilepsy. Often in their sleep. Uusally without any evidence of a seizure having occurred. But then again, if the person was asleep (and alone), who would know for sure whether or not there had been a seizure?

It's not something that's talked about a whole lot. Not information that many parents of children who experience seizures are made privy to. 'No need to upset them. To scare them. About, you know, something that will never likely happen', the thinking goes.

Not that common, perhaps. But SUDEP does account for 10% of all epilepsy-related deaths. Admittedly, 85% of these fatalities occur between the ages of 20-50 years. Still, the incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year which is at least 10 times of the sudden death rate found in the general population. Which means that if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have "Sudden Death".

Yeah. That's what I said.

Perhaps that's what happened to Tammy Marquardt's little boy. Perhaps it was something else. But either way, it appears that there was no credible evidence that his mother was at fault.

I can only wish her well, hope that her legal troubles are soon over and offer her my deepest sympathies, both for the loss of her child and for the past 14 years. And struggle with the realization that yes, there is something worse than losing your child. That would be losing your child and then being accused of and convicted for his murder.

And as to the other tragedies in this story, the life of a two-year-old little boy snuffed out and the higher risk of death for persons with epilepsy ... I can only offer this.

Thursday, March 26th is Purple Day.

Which I will be blogging more about soon. But as a recent slogan I've seen says so well ...

"A cure may be found someday.
But someone needs your help today".

Price of a Shoe Toss

Three years? Three years in jail?
For tossing a shoe, of all things?

Talk about a political shoe toss football ...

There's ridiculous. And then, apparently, there's Iraqi justice. Yeah, I know, a bit of a oxymoron that.

Words of Wisdom

Canadian soldiers in Afghanistan are offering two words of advice to the expected incoming surge of 17,000 American troops.

"Bring Tanks"

And while many of those supposedly "in the know" apparently feel that the war in Afghanistan is already a lost cause, I dearly hope they are wrong. Very, very wrong.

Blogging X Two

Yeah, you've heard this whine before. But it really is hard to keep up with two blogs.

Sometimes I will follow a link to someone's Blogger profile and see three or four blogs under the name of one person. It makes me cringe, I tell ya. How do they do it?

And sometimes it seems to go in waves, I might have lots to say on one blog but nothing really motivates me on the other. Which might be slightly better than when I feel oligated motivated to post on both.

But there does seem to be a bit of an ebb and flow ... perhaps that's a creative ebb and flow. Who knew?

Anyway, I did think to share this with you.

A snippet of a song heard in the car today.
One I've heard many times but a few verses of which particularly struck me today. Took on a whole new meaning.

I guess I thought you'd be here forever
Another illusion I chose to create
You dont know what ya got until its gone
And I found out just a little too late
. . .
Now being without you
Takes a lot of getting used to
Should learn to live with it
But I don't want to
Being without you
Is all a big mistake
Instead of getting easier
It's the hardest thing to take...

Some people say acceptance is the last stage. Others say it is only the first step. I will let you know if I ever get there.

But enough of that for now. I really gotta get to work.

Two Glasses of Wine

This find reminded me of something I rediscovered recently. And which a recent post by Sara at Balancing Act brought up for me yet again:

When things in your life seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 glasses of wine...

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty Mayonnaise jar and proceeded to fill it with golf balls.

He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar.

He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else He asked once more if the jar was full. The students responded with a unanimous 'yes.'

The professor then produced two glasses of wine from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed.

Now, said the professor, as the laughter subsided, 'I want you to recognise that this jar represents your life. The golf balls are the important things; your family, your children, your health, your friends, and your favourite passions; things that if everything else was lost and only they remained, your life would still be full.'

The pebbles a re the other things that matter like your job, your house, and your car. The sand is everything else; the small stuff.

If you put the sand into the jar first,' he continued, 'There is no room for the pebbles or the golf balls. The same goes for life . If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you.'

Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical check-ups. Take your partner out to dinner. Play another 18. Do one more run down the ski slope. There will always be time to clean the house and fix the disposal. Take care of the golf balls first; the things that really matter. Set your priorities. The rest is just sand.'

One of the students raised her hand and inquired what the wine represented.

The professor smiled. 'I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of glasses of wine with a friend.'

H/T to Barbara

It's A Terrible Thing To Think But ...

Thanks, at least in part, to Nova Scotia's new Protection of Persons in Care Act, there has been an increase inthe number of reports of incidents of abuse and neglect in Nova Scotia nursing homes.

Not necessarily an increase in incidents but an increase in the reporting anyway.

Another report out today.

Staff at a Nova Scotia nursing home repeatedly left infirm patients unattended while they went for smoke breaks, including one resident left lying on a bathroom floor, says a Health Department inspector’s report.

The three employees at a unit at the R.K. MacDonald home in Antigonish took their seven-to-15-minute cigarette breaks together outdoors on "several occasions" during the May 5-6 night shift last year.

Donna Dill, director of monitoring at the continuing care division of the Health Department, described the incident as "serious" because "if residents are left unattended anything can happen."

"They’re in nursing homes so they’re supervised and attended," she said in an interview.

The inspector wrote that "when the staff were in the courtyard at midnight, an incident occurred where a resident was found on his bathroom floor. The call bell was pulled by the resident’s roommate, who was requesting for the bathroom light to be turned off."

The report adds there "is no indication as to whether the call bell was ringing while the staff were in the courtyard, or had it just been pulled once they were back in the building."

The report said the bell couldn’t be heard outside the unit, which has 39 beds.

Incidents like "a wet, soapy facecloth " being "placed in a resident’s mouth by a staff member while completing morning care" after the resident lunged at the worker's chest and a question as to the appropriateness of a resident's "relationship" with a female resident due to a decrease in the woman’s mental competency in a home which was understaffed are particularly troublesome to me.

And not just because such things are happening to our senior citizens.

We were very close to having my Mom placed in a nursing home. In fact, we had put her name on the list for placement last February. It was just after we were forced to put her back in the hospital last summer that her name came up on the list for her preferred home. Which spot they promptly gave to someone else, citing a need to reassess her given that she was in hospital. Which, by the way, they never quite got around to doing.

At the time, we were quite upset by the whole thing. Earlier that year, my Mom, my brother and I had visited nursing homes in the local area and had all agreed without question that this was the one we wanted. And I'm sure (or I would like to be) that it would have a really nice place for Mom.

But reading these reports of neglect and abuse ... makes me almost think that it was better that it ended as it did. Because although chances are that she would have received as good or better care in the nursing home as in the hospital, I can't really be sure of that now, can I?

I Must Have Blinked ...

It's hard to believe that my baby, yes, my baby, is now officially 13.

That's right ... the big One Three! A teenager, of all things!

I mean, I'm well aware that she's been thinking that she was a teenager for the past two years. But now it be official. Lord help us all.

Happy Birthday, Kit Kat! We love you.
* You low down, rotten half child/half woman mystical creature of mine.*

* Said with a great deal of love, of course.

Going On

It's funny how life forces you to go on. Whether you actually want to or not.

There's always so much to do ... work, kids, house, work, laundry, kids, cook. Did I mention work?

That somehow, one way or another, you find yourself putting one foot in front of the other. Whether or not you really mean to. Whether or not you really want to. Whether or not you even realize it. You just find yourself doing it.

That doesn't mean that there aren't moments ... moments that sometimes stretch into hours, even days ... where you move as if your body is weighted down by hundred pound weights. Where your mind is not much more than a fog. Your stomach a rock. A lump in your throat. Tears in your eyes. It can hurt so bad. So bad that I can't even convey to you how bad so bad is.

There's a huge piece of me missing. A huge hole, almost less a hole in my life than in my heart, my soul. It's just ... gone. With nothing, absolutely nothing, to replace it.

And yet, somehow, like I said, I find myself doing what I do, living my life (so-called), every day. The majority of people around me would, I think, hardly even recognize that anything was wrong. Because I don't walk around in tears (usually), I do smile and laugh and chat, just like always. And most of the time when I smile and laugh and chat, it's not forced. It's not fake. It's me.

But those other times, oh God, those other times. How truly, deeply, painfully it hurts.

I don't want to accept that Mom is gone, you see. Because, in my mind, to accept that she is gone is to ... accept.

To accept that she will no longer be a party of my daily existence, a part of my life and my children's lives. It would be to move on. And that, that is the last thing in the world I want to do.

And yet, somehow, almost inexplicably, I find myself still going on.

I will slog my way through my never-ending, always-changing to-do-list. I will get through filing Mom's income tax return. And ours. I will attend numerous school meetings, set up a RDSP for the Blue Jay, make phone calls, pay bills, slog through paperwork and tend to all the things, both big and small, that always tend to pop up. And I will work. And work. And work.

And through it all, at times, I will move as if my body is weighted down by hundred pound weights, my mind will be not much more than a fog. my stomach will be a rock and there will be a lump in my throat and tears in my eyes. And a hole in my heart.

But other days, the sun will shine, my kids will laugh and I will be (almost) happy and content. Because my Mom is missing. And even on the best of days, almost is as good as it gets.

Update: I never realized until after I posted this but ... three months today. To the day. I miss you, Mom. Something tells me I always will.