A Slice of Americana Canadiana

An actual conversation between myself and HWWNBN late last night:

HWWNBN: Why are my papers (various quotes for building material that he left on a coffee table) all messed up? 

MMC: Because they were on top of the coaster I needed. 

MMC: But why are the papers on the table, anyway? 

HWWNBN: They're quotes ... (indignantly) 

MMC: Yeah, but you've already bought the stuff! 

HWWNBN: Yeah ....   

MMC:

HWWNBN:  They're garbage. 

MMC: So let me get this straight - you left your garbage on the table instead of throwing it out? And now you're complaining because somebody messed up your garbage? 

HWWNBN:  

MMC: Seriously?? 

HWWNBN: 

At any rate, I am pleased to report that when I got up this morning the garbage, excuse me, his papers were gone from the table.

D-D-D-D-Done Did

Remember that project I really had to get going on? The one I posted about a year ago? Yeah, that one.

Well, I am pleased to report that it is now, finally
DONE DID. **

Yep, that's right - it only took me one year from the time I first posted (aka 14 months after the Blue Jay actually turned 19) to get this far.

But, hey, in my defence, I now have an actual COURT DATE. For next month.

I know, hard to believe, isn't it?

Although, also in my defence, the delay was not entirely my fault (she proclaims loudly, for all to hear).

One good thing that has come out of the process of applying for guardianship of the Blue Jay, on my own, is that I now definitely have a greater appreciation of the struggles faced by those families who choose to proceed unrepresented in a guardianship application (with the help of my Kit, of course).

Struggles such as having to coordinate affidavits between two different doctors. And, more importantly, having to find some sucker good-hearted lawyer soul willing to swear those (and other) affidavits, pro bono like.

And, not just pro bono, but actually, like, willing to attend at the doctors' offices. Because, believe it or not, doctors do not attend at lawyers' offices. Oh no, lawyers attend at doctors' offices. And never the twain shall meet. Let's just be clear about that.

And hey, who knew? Besides the fun involved in actually figuring all that out, that can, in fact, take just a little bit of time.

But, at any rate, I am very pleased to announce that I have made it this far.

Particularly because, going forward, the matter really is pretty much out of my hands. We have a court date set, you see. Which means the day (only a few weeks hence) will dawn (whether I like it or not) and I will be completely prepared because, really, what choice do I have?

That's right ... it is now officially out of hands.

Which, really, come to think of it, is no doubt a very good thing.

** No, it may not be a DONE deed. 
But I DID, indeed, get to the point where it is out of my hands. 
So there. Take. That.

A Ray of Light in the Darkness

I have touched briefly on the years of Hell we went through when the Blue Jay was little - actually from the time she was 13 months until she was 10 years old. Although seizures may not have touched our lives, directly, for the past seven years, those memories are not just burnt into my brain but a part of the very fabric of our family.

Such is the laser-story of the background to my reaction to what I discovered on FaceBook yesterday. [Perhaps FaceBook does serve some useful purpose, after all. Who knew?]

So what did I discover that has so completely garnered my attention? See for yourself.




You know, a very large part of me has to wonder why ... why is the use of such a discovery a big deal at all? Why are families forced to pack up and move across the country to get their child the treatment they need?

Perhaps it is the fact that I live in the Great White UP, where we have a system for the approval of the use of medical marijuana. I gather the situation is a little more cloudy in the United States.

Whatever the reason, I can tell you that without a moment's hesitation I would have tried cannabis for the Blue Jay in our darkest days. Yes, for the part of that time, she was only a toddler, but those seizures were robbing her of her life.

Although the situations are not identical, I strongly identified with the two families profiled in the video above. When we were living through our own personal nightmare, the ketogenic diet was the new kid on the block, looked down upon by medical professionals, and not just completely misunderstood by the general public but pretty much totally unheard of (essentially a step down from being completely misunderstood).

The food was much too "unpalatable", how can a child possibly survive without going to birthday parties, it's a regiment that is impossible for a family to maintain, no child will put up with it and, of course, it was much, much too unhealthy - we heard it all and I have a response for each and every one of them, although I won't bore you with that at the moment. Let's just say that families do what needs to be done and can be incredibly innovative and creative when need be. And done with a little care and attention, there is no need for the ketogenic diet to be so unhealthy.

The diet was our "miracle drug" (although, of course, not a drug) at the time. And I have never regretted it for one moment. Not when I fought with the doctors for months to get them to agree to merely try try it; not when we fought daily with the Blue Jay, herself, when we initially tried to get her to accept it and worked for months with a child psychologist to convince her to actually eat the food; not when, after going almost two years seizure-free on the diet, we lost control and essentially had to start all over again; and not the second time we lost control thanks to a doctor's neglect and the Blue Jay ended up in the hospital, not just actively seizing again but with dangerously low potassium levels.

Hard? Hell, yes.

Sorry, we gave six years of our and the Blue Jay's life to it? Hell, no.

So now you have a much more complete background to my response to the above video. Perhaps that's why I can't see the issue with using medical marijuana in this way. Instead of horror or concern, I was elated to learn of a new epilepsy treatment and fascinated to learn how, instead of growing plants to maximize the THC (the chemical that makes you "high") content, they actually manipulate to increase the CBD content, which is the compound that is effective in stopping the seizures.

The original post I saw on FaceBook, accompanying the above video, read like this:

Washington Post covers medical cannabis for pediatric epilepsy. What are your thoughts? How far would you go to save your child? We were happy, and a little nervous to tell our story so publicly. But I feel it is absolutely necessary. Families need to know this is an option, and they can work with their medical team to make the best decision for their child. ♥ Heather

I must confess I had some trouble grasping exactly why this family was at all nervous to tell their story, why they weren't, instead, just singing it from the rooftops.

But, hey, I am a lawyer by training so not totally clueless - yeah, yeah, I get that whole "illegal in some states" thing compounded with the likely cries of "Oh my God, what kind of parent would give children as young as toddlers marijuana on a daily basis? For heaven sake, call Child Protective Services immediately!". There's some in every crowd, you know ... but that, too, is a story best saved for another day.


So. Shortly after watching (and raving) about the above video, I found this one in my news feed.



Now I might disagree with the good researcher when he states that they know how most of the current anti-epileptic drugs work or don't work (and, by the by, he actually contradicts himself later in the interview when he notes most of the most effective anti-epileptic drugs were discovered by accident and they don't have clearly defined mechanisms of action for many of today's drugs), but to me, that is much less relevant than his comments on the "ethical issue" of giving marijuana to toddlers

After the interviewer notes that at a "headline level", the issue was still very much giving medical marijuana for toddlers, he asks the good doctor if he had any "ethical" issues with this. Apparently he does, "very much so", in fact, based on a long-term New Zealand study of people who had used marijuana, which found that the only group that showed permanent cognitive damage was moderate to heavy users of marijuana during adolescence.

Like it or not, not exactly a surprising result. But as noted in the interview, this study was looking at the effects of THC. And as noted in the first video, these plants are being bred to specifically lower the level of THC and increase the level of CBD.

I can understand accept that doctors require their double-blind studies and believe they "need to know" how/why a substance works before recommending it to their patients. But it's one thing to clinically speak of the 35% of patients with "difficult to control seizures" and quite another to actually be one of that 35%.

Because, trust me, until you have actually lived that, You. Have. No. Clue.

I wonder how many people will only hear and remember those headline comments. I wonder how many people out there will actually listen to the entire interview, the defining moment of truth of which comes only at the end

When asked if he, personally, would use marijuana for his child, the answer was more than telling.

If that were my child and I had a child with difficult to control seizures and knowing the risk of uncontrolled seizures, if I had something that would control those seizures without any obvious major adverse effects on the child, that would be, as my personal decision, I would do it. Not as a clinical recommendation, as a parent myself.

. . . 

Now if that was a child of mine and somebody offered me a less than perfect but effective treatment, I am going to say yes to it.

Why? Because the good doctor is well aware of the risks of status epilepticus  and SUDEP (Sudden Unexplained Death in Epilepsy - a phenomena they tend not to tell parents about, by the way) and that the risks of these things happening dramatically increase in a person with poorly controlled seizures.

End of the day (and you will, no doubt, be happy to know, end of this post), the bottom line in is that if a new treatment for epilepsy that has thing kind of success rate can be found, naysayers, busy bodies and governments need to get the hell out of the way. Because, believe me, unless you live it, you. have. no.clue.

Blog Roll Blues

It is with great sadness that we hereby announce the paring down of Ye Olde Blog Roll [It's Eclectic]. From it's former splendor of 25 blogs, it now boasts but 18.

Which might not sound too bad but for the fact that of that 18, roughly only half, at the most (being generous) can boast any new content on a semi-regular basis.

'Tis a sad, sad day.

Fortunately, we do still have "The Best of the Best" from Neptunus Lex and the Neptunus Lex Super FB page (first rule of the NeptunusLex Super Secret FB page - don't talk about the Neptunus Lex Super Secret FB page) to read.

* My apologies for the pic - but as noted, 'tis a sad, sad cheesy kind of day.

Best. April. Fools. Evah.

Reposted from Lex's in honour of April Fools - in my mind, this is one of (if not) the best April Fools jokes I have seen (let alone been subjected to).

But in many ways, the best part is found in the comments - just how long can it take some people to figure this out?

It's. A. Joke. Folks.  :D

Bad news
By lex, on April 1st, 2007 

I’m sorry to have to share this with you, but it looks like we may have to amend the terms of our relationship: I guess I finally crossed the line. Something I wrote earlier in the week offended some Very Important People who made official representation of their objections through political channels and finally down through my chain of command. I got the call yesterday – it’s never good news to get called by your boss on a Saturday. Had to happen eventually I suppose, but I kind of hoped my tattered veil of anonymity could outlast my active service. 

Now, many of you know that I have been blogging under a pseudonym in order to protect those I work for from having to officially recognize the source of these my musings, thereby lending them even the patina of official endorsement from the USG, DoD or DoN. The problem – as I very well knew from the beginning – is that there really isn’t any such thing as anonymity on the net. The world is full of people looking for a reason to take offense, and if you hang out on the web long enough, eventually you’ll make somebody angry, a complaint will get lodged and, well: Here we are. 

READ MORE

Twenty

It's flummoxed, I am.

You see, the calendar (and my darling daughter, herself) tells me, in no uncertain terms, that my oldest is
twenty years old today.

Twenty? Seriously? You've GOT to be kidding me ...

I didn't really mind when she turned nineteen - sure, it seemed a little hard to believe but not that big of a deal. At least, not as big of a deal as her turning twenty.

Yeah, yeah,  I am well aware that in the eyes of the law, she became an adult last year.

But twenty? My kid is twenty??

HAPPY BIRTHDAY BLUE JAY

~ MAY YOUR BIRTHDAY BE AS SPECIAL AS YOU ARE ~

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.

On Dreaming

Once upon a time, I asked Lex if he would ever fly again. The question was asked while he was still actively serving, but a few years after he had strapped on a Hornet for the last time. It was beyond clear how much he loved and missed flying so I asked if he would ever consider flying a bugsmasher.

No, he replied, he wouldn't. Something to the effect that having once partaken of government-sponsored crack cocaine, there was no going back to mere commercial flight. I remember thinking that the only cure for that kind of drug must be complete withdrawal.

And it seemed like a reasonable enough response at the time - even though not in my frame of reference (I would jump at the chance to fly any aircraft, bugsmasher or not), I could accept that from his point of view, there simply was no going back.

There was a time and place
Not far from here and now
Maybe a brighter day
Maybe they had it made somehow
Living for there and then
Under a psychadelic spell
No one was listening
Still they had so much to tell 

But isn't it how funny how time changes things?

Whatever happened to the dreamers
They always look beyond the sky
Saw a world they could believe in
But only when they close their eyes  

A mere few years later, Lex took on a weekend job flying tourists and other assorted types in dog-fights, with the occasional learn to fly jaunt thrown in for good measure. And it wasn't long after that, when he took on the challenge of learning to pilot taildraggers.

Next thing I knew, he was back in the fighter pilot game.

There were the politcians
Men of the cloth, painters and poets
Starting a revolution
Without even knowing
Making the world around us
Making heaven and hell
Saying so much about us
Still they had so much to tell  

You left us much, much too soon, sir.

But you left us living your dream. And for that, I will be forever grateful.

Whatever happened to the dreamers
They always looked beyond the sky
Saw a world they could believe 
only when they close their eyes
Where are they nowThey've all left town
Bringing the clouds    

Why are we on our own, why are we on our own  

Nothing's ever been this way before
A dream is just a dream and nothing more
Nothing's ever been this way before
A dream is just a dream and nothing more

But that I can follow your example and, no matter what, never give up on my dreams.

More Good News on the "Hate Speech" Front

You might recall that I was very pleased when the move was made to remove sec. 13 from the Canadian Human Rights Act last year.

Well, I was even more pleased when I learned today that the Supreme Court of Canada (SCC) has now weighed in on the wording of a similar provision in Saskatchewan's Human Rights Code.

The facts of the case are notorious. After William Whatcott distributed flyers condemning homosexuality using very strong language, the Saskatchewan Human Rights Tribunal found that that his actions breached sec. 14(1)(b) of the Code, which prohibits the publication of printed matter that “exposes or tends to expose to hatred, ridicules, belittles or otherwise affronts the dignity of any person or class of persons” because of sexual orientation.

Although the SCC upheld part of that provision as constitutional and not a violation of Whatcott's freedom of expression under the Canadian Charter of Rights and Freedoms, it found that the prohibition against ridicule, belittlement or affronts to dignity did not meet constitutional muster.

The Court held that those words are not synonymous with hatred, which was defined as “whether a reasonable person, aware of the context and circumstances, would view the expression as likely to expose a person or persons to detestation and vilification on the basis of a prohibited ground of discrimination”. Thus, the Court made clear that it is unconstitutional to prohibit speech that is something less than detestation and vilification.

Finally, the SCC held that although freedom of religion (Whatcott argued that his flyers were motivated by his sincere religious beliefs) and religious speech have broad protection like the freedom of expression, at the same time, that speech cannot expose vulnerable groups to detestation and vilification, even if it is sincerely-held.

Although it will fall to the politicians to ultimately (hopefully) remove remaining "hate speech" provisions from Canadian human rights legislation, the SCC decision at least clarifies that

• the test of hatred must be applied objectively (i.e., the reasonable person aware of the relevant context and circumstances), not based on the subjective views of the publisher or the victim; and
• “hatred” involves two concepts—detestation and vilification, which enforce the legislative objectives of anti-discrimination laws.  

I guess all we can do now is await the political process. Bill C-304, which would repeal the hate speech provision in the Canadian Human Rights Act (and which provision the Federal Court found largely constitutional in October, 2012),  has passed the House of Commons and is currently being debated in the Senate.

In Alberta, Premier Redford promised during her leadership campaign to repeal the equivalent Alberta provision.

Any other Province care to step forward and be heard?

~  ~  ~  ~

By the by, writing this post got me to thinking about our good friend (term used loosely), Rev. Stephen Boissoin, whose case (last we checked) was winding its way through the courts.

I am pleased to say that the good Reverend (again, using the term loosely) was successful, both in Alberta's Court of Queen Bench and the Court of Appeal, where the Court held that “matters of morality, including the perceived morality of certain types of sexual behavior, are topics for discussion in the public forum,” and “freedom of speech does not just protect polite speech.”

In the words of Jonathan Kay, "Just so".

He Has The Whole World in His Hand

I came across a picture today that I thought was kind of cool.

So, tell me, what do you think?

Yeah, sure, I know ... nice snap for sure but not really that big of deal, right? Certainly not enough to get an honourable blog mention.

Are you sure about that?

JEFF FRIESEN has jumped the rails with his version of taking the train across Canada.

Instead of getting aboard a Via Rail locomotive, he carries a miniature replica of a train with him, sets it down on a miniature track in a landscape and takes a picture for his series, The Canadian: Ghost Train Crossing Canada.

.  .  .

The train, five centimetres tall and not quite three metres long, is a replica of the 1959 Canadian, the first train to “almost cross Canada.” It went from Montreal to Vancouver. As a vintage train, it is “a ghost from another age.”

And he's photographed that same train streaking by the turquoise water of Lake Louise, crossing the canola fields of the Prairies, disappearing into a rock tunnel in Ontario and crossing a moss-covered log bridge in Quebec.

Apparently the photos have went viral in Europe and the US, which begs the question of why that hasn't yet occurred in Canada.

You have to admit, pretty cool, right?

And not bad for a Canadian, let alone a Nova Scotian, eh?

Humpty Meets Dumpty. Again.

Having a particular interest in special education (gee, I wonder why), I subscribe to a couple of Education newsletters. They're both US-based, of course, but something is better than nothing, says I.

So it was that today I came across a synopsis in Education Week stating that a Tennessee Senator wants to pass a law requiring counselors and other school officials who learn that a student has engaged in homosexual activity to report this information to the parents. Thinking that this sounded interesting in a warped sort of way (and admitting that the thought that some right-wing politician strikes again did cross my mind), I clicked on the story.

The only thing is that (in my reading, at least) the story doesn't quite work as advertised - what the synopsis and article purport to say and what the proposed Bill actually says simply do. not. mesh.

The proposed Bill, you see, would provide that

1. classroom instruction, course materials and other informational resources that are "inconsistent with natural human reproduction" will be classified as" inappropriate" for students from pre-K - Gr 8;
2. any counseling by a school counselor, nurse, principal or assistant principal of a student who is "engaging in, or who may be at risk of engaging in, behavior injurious" to their or another's "physical or mental health and wellbeing" must be done, if possible, in consultation with the student's parents and the parents must be notified that such counseling has occurred; and
3. the parents must be notified of a student "whose circumstances present immediate and urgent safety issues involving human sexuality".

And that, right there, is the problem, you see. Or, at least, the problem I see.

Because, for me at least, a requirement that the parents be notified in the case of a student whose "circumstances present immediate and urgent safety issues involving human sexuality" is very different from requiring notification in the case of homosexual activity. This despite the fact that it would appear that the good Senator, himself, might believe otherwise.

Admitting that, if perhaps you are a total homophobic, you might consider any and all homosexual activity to present immediate and urgent safety issues involving human sexuality, might I suggest that just because you say it or think it does not make it so?

Don't get me wrong, I am not making a comment on the "rightness", "wrongness" or "morality" of homosexuality; what I am saying is I find it very hard (read: impossible) to make the stretch that would equate homosexuality with "urgent safety issues".

The Senator, apparently, considers homosexuality to constitute an urgent safety issue because of the possibility of contracting HIV and AIDS. Putting aside the rather awkward fact that you can also contract HIV through heterosexual contact, doesn't any form of sexual activity open you up to the possibility of contracting various sexually-transmitted diseases (some of them pretty nasty, by the way)?

And, by the by, doesn't heterosexuality by a female open her up to the possibility of pregnancy, which some might see as potentially dangerous (be it physically, emotionally or mentally) depending on the age of said female? We are, after all, talking about students here.

But. Back to my original point (yes, of course, I had one; why do you ask?).

Much along the lines of 'Humpty Dumpty Strikes Again', just because you say it doesn't make it so. And, just as an aside, when you attempt to legislate, you might just want to choose your words carefully. Or else you may just run the risk of legislating "human reproduction" right out of existence, which I'm thinking might have some might nasty consequences, in and of itself.

The Law of Unintended Consequences being what it is.