Wow, what a great video! You tell them, Megan.

   

So what say you?  Let's distribute this far and wide.

Share it on your social networks. Share it with your friends. Show it to your children.

But, most important of all ...

Do. Not. Limit.

Anyone.

H/T to Ashley's Mom at Pipecleaner Dreams

Cross-posted at A Primer on Special Needs and the Law 

When Words Fail Me ...

This video speaks for itself.

But the saddest scariest thing is this woman is not alone. She may be the only one brave enough to actually type and deliver such a letter, but I can guarantee you she's not the only one who thinks such thoughts.


 


Perhaps most of those who do would never suggest that a child, any child, should be euthanized or his "non-retarded body parts" donated to science. But they wouldn't hesitate to express their belief that such children should not be going to their neighbourhood schools, should not be participating in the same extracuricular activities as their "normal" children do; perhaps, even should not be taking up scarce dollars in our healthcare system.

We would like to believe that human beings are inherently good. That, most of the time, if we just give them the chance, they will do the "right thing".  Maybe we're right - maybe most are.

But something like this has to make a parent wonder how many more monsters are hiding in the darkness or behind the annonimity of their keyboards. And shudder at the thought.

H/T to Krista Lettues for the video

Cross-posted at A Primer on Special Needs and the Law

NOT Giving Up the Ghost

Nope. Most definitely NOT Giving Up the Ghost.

But, maybe, just maybe, giving up all pretense that this is, in fact,an active blog. Because, really, it's not been looking much like one lately. And, were I to be completely honest with myself [and if not me, then who??], it hasn't for quite some time.

Don't get me wrong. It's not like the blog is actually going anywhere.

No, Free Falling is not going to disappear, fall off the face of the earth or anything like that. It will continue to ... well, Free Fall, I guess. And that is why I am making a point of most emphatically stating that I am NOT Giving Up the Ghost.

But, once upon a time, I use to write about politics and current events. A fair bit, in fact, if my Blog Archive does not deceive my eyes. Alas, not so much [cough, cough] now. But I have decided to make a conscious decision [Did that even make any sense??] to cut myself some slack about that. A lot of slack, in fact. It is what it is and I am (finally) prepared to accept that.

Although, as an aside, I must say that I do have to wonder if I am just shouting into the abyss right now with no one to hear my words but myself. Once upon a time, I use to have regular readers, you see. But now, perhaps not so much. Of course, once upon a time, I also had Lex's readership to draw upon. Again, sadly, now not so much.

Just for the record, I haven't given up blogging, though. A Primer on Special Needs and the Law is still going strong. Which reminds me, if anyone is out there interested, I can cross-post my second 5 Minutes of Fame television debut for you to take a peek at.

But back to the topic at hand.

Then again, I guess I have pretty much summed up the topic at hand. The blog will still be here. And I imagine I will post from time to (unspecified) time. Just because I can.

It's funny; I've never thought of myself as vain and yet I must admit I really do enjoy ~ looking ~ at my blog. I like to make it pretty (must be a gurl thing). So who knows ... I might just find myself changing the background around more than I do posting. And if so, so be it.

Oh yeah, there is one other thing I like to use Free Falling for besides actually, you know, blogging at. It's a great place to keep my own blog roll in one place. Although, were I to be honest, I haven't been using that much lately, either.

But we shall blame that on Facebook - giant time suck that it is; yes, we shall. And, of course, it doesn't help any that I now boast not one, but two Facebook business pages, both clamoring for content at all hours of the day and night.

But, hey, just to prove that Ye Olde Blogroll is still alive and well, I added a new blog to it the other day. [Quick game - can you guess which one it is?] Now, if I can just make sure I get here to actually read them.

And, of course, lest we forget (and I know I never shall), this little spot in cyberspace also boasts The Best of the Best of Neptunus Lex. 'Nuff said.

And so I bid you a fond adieu (at least for now).

And leave you with this naval aviation video.

                         

Just because I can.

UP UP and AWAY

Cuz that's what I did.  I found myself an aeroplane and flew up, up
and away.

It's off to Winterpeg I went (thank goodness it's not winter!!). For my niece's wedding. And for to finally meet the world's cutest little great-niece.

Pics to follow ... I can't seem to figure out this silly I-pad. :(

The End

When Up is Down and Down is Up

Good drugs ... let's admit it, we're all looking for some, right?
Okay, maybe some of us more than others.

But I am definitely looking for a good drug at the moment.

A new drug.

One that won't make me sick. 
One that won't make me crash my car. 
Or make me feel three feet thick. 

One that won't hurt my head.
One that won't make my mouth too dry.
Or make my eyes too red.

One that won't make me nervous ... 

Well, you know the rest.

Here's the thing - we're playing with my MS drugs at the moment. Upping this one and downing that one. And some days, like today, it feels like a real roller coaster ride.

So tell me, does anyone know?
Did Huey ever find that drug he was looking for?

Cuz, if so, I'm thinking he better be willing to share.

Or else, things might just get a wee bit ugly around here.
And trust me, nobody wants to see that.

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. 

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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.