So

Purple Day is fast approaching.

And Purple Day is a bit of a big thing around here, as you might recall.

Meaning right at the moment I am up to my eyeballs in posters, buttons, wallet cards, Purple Daisies, brochures, pamphlets, bookmarks, pens, stickers ... the list goes on.

And cupcakes, of course ... right, never forget the cupcakes!

So while we here at Free Falling prepare to do our small part in the grand endeavour to paint the world Purple ...

Please remember to Wear Purple on March 26th.

And have A Very Coole Purple Day.

Purple Passages

Monday, March 26, 2012.

Here it is. Yet another Purple Day.

The thought of which, at the moment, leaves me feeling totally exhausted.

Please don't get me wrong - I love Purple Day. My family loves Purple Day. In fact, it is the only one of the few only things we all do together.

But it's been a hell of a ride the past few weeks - flat out with too many things to really mention here (suffice to say, I am working with an amazing business/public speaking coach who is really helping me rework my flagship presentation - but it's a lot of work I am trying to accomplish by the date of my next speaking engagement on March 31st. While, you know, working. And doing everything my often interesting life can entail).

And then, of course, there was is Lex. Which, although that pain will be felt for a good long while, at least I'm thinking (hoping) that the worst of it is over.

But back to Purple Day. For a moment, please.

There were purple things that simply had to be done.

Such as getting everything to our neighbourhood daycare who so graciously agreed to do a Purple Day Bunny Hop (fundraiser) on very short notice. Thanks to yours truly. The short notice part, that is.

And cupcakes. Let us never forget the cupcakes.

Five dozen for the Blue Jay's high school - where Purple Day (complete with the provision of purple cupcakes, for a donation, of course) has become an annual tradition.

Then another three dozen for Purple Day at the Mall. Which, unlike the ones for school (part of Purple Day at the high school involving the students in the Blue Jay's resource room decorating the cupcakes they sell), these particular ones required decorating. So decorate we did.

In between working in Halifax on Friday and returning to Halifax on Saturday for a Circles workshop and before Purple Day at the Mall. On Sunday. Which would usually be done on Saturday, but I am still working on that whole being in two places at one time thing. To date, results have been ... shall we say ... mixed.

And so we spent yesterday afternoon at out Purple Day table in the Mall. Sunday was of course a bit slower than a typical Saturday, but a good time was had by all.

But when the Blue Jay and Kit Kat headed off to the Blue Jay's school this morning with their 5 dozen cupcakes, to meet up with the teachers who had agreed to provide another four or five dozen, I breathed a sigh of relief, rolled over and went back to sleep. Feeling like I deserved it, after all.

So although I am all decked out in my purple finery today and did manage to get to the grocery store to transport the Purple Day Cake I had ordered, special-like, to the little ones at the Daycare to thank them (because, let's face it, all that hopping can take a lot out of a body and it requires a  high dose of sugar to replenish itself), that is about the extent of my energy for this particular Purple Day. And for anything else today, too, I'm sad to admit.

But life goes on.

Indeed it does ... I know that for a fact because Kit Kat turned 16 a couple of weeks ago and the Blue Jay will have lived on this earth a full 19 years, come Thursday at about 3:30 in the morning. Yes, I do believe I remember that.

But 19? Really?? You've gotta be kidding. And speaking of such things ... ummm, I guess that means I better get shopping soon, huh?

Alas, there's more to being a 19-year-old Blue Jay than cake, friends, bowling and gifts. Nope, that would be too easy. You see, it's also the time my darling daughter transitions from the child to the adult system. Meaning it's the time that she is "assessed" to see where she might be placed "fit" in that lovely "continuum of services" offered by the province's Services for Persons With Disabilities program.

So that was interesting, it was.

While I met with our caseworker's supervisor to discuss the issue of how guardianship might affect the Blue Jay's eventual eligibility for the Independent Living Support Program, the Blue Jay, herself, worked through the assessment tool with the worker. They had made it about three-quarters of the way through when I returned to join them. And I must say that I was very, very impressed with the Blue Jay - with her unexpected (at least to me) insight into what she could do on her own and where she needed help. I do believe she might just be growing up. With or without my permission, apparently.

That interview took a lot out of her, though.  After a full day at her one-day-a-week work placement through school and that rather lengthy appointment, she was pretty much (understandably) wiped out for the rest of the day.

And so it goes, I suppose. We move into the next phase of her life, ready or not.

And thus it was, that driving home from that appointment Thursday afternoon, I couldn't help but think ... It's been a wild ride, honey. Hang on for Part II.

Purple People

Life Through a Purple Haze

Wow, I can't believe that Purple Day is tomorrow. And I haven't even posted on it yet!

Not because I've forgotten about it or we've just been sitting around on our purple bottoms -no way!

It's just that we've been too busy doing stuff for Purple Day.

Last Saturday was spent at our local Mall with a Purple Day table. We sold bracelets, handed out lots of purple pins, ribbons, cupcakes as well as information on epilepsy and had some great chats. It was so cool to see people walking around the mall wearing the Purple Day pins and the epilepsy ribbon. Especially since the vast majority of them had never heard of Purple Day before.

And besides painting both blogs purple, we've had our local Village Council proclaim March 26th as Purple Day, we have three local schools (elementary, middle and high school) participating and a local day care is involved in the Purple Day Bunny Hop.

Oh yes, the Blue Jay will also be selling purple cupcakes (with the help of some of her friends and the resource staff) at her high school tomorrow, there will be special PPP draw for the kids wearing purple at the middle school (grand prize being a Purple Day Cake for that student's class) and, yesterday, the Kids on the Block landed at the elementary school to put on a presentation for the Grade 5s at the elementary school.

So that's my story and I'm sticking to it.

Now for any of you wondering what this Purple Day is and what all the fuss is about ... you should have been here last year! [Just scroll down through that last link]

Just teasing ... Purple Day is about a very special young Nova Scotian. It's about speaking up and stepping forward. About not being afraid. About bringing epilepsy "out of the shadows". And about what one person can do when they make up their mind to something.

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.

But when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation, it empowered her to speak up for the first time in front of her classmates and admit that she had epilepsy.

And yet 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.

Last year, we brought Purple Day to the Annapolis Valley. And to the combined approximately 700 students at a local elementary and middle school. And like I said above, this year we expanded it a little.

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?


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

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. And that number is growing every year.

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.

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".