Strong-willed Child**

I may, perhaps, probably not have written here for a while (again), but hey, I'm back (at least for the moment) so ... whatever. It's my blog and I will post when I want to (said somewhat guiltily). But

moving on.

The Kit Kat is in her fourth year of university. The first three years she lived in the dorm, but this year she is sharing an apartment with a friend. And I have a few thoughts about that.

First, I thought she moved out on her own the first year of university. For her birthday prior to the first year, I bought a big (and I mean BIG) wicker laundry basket and filled it up with all the everyday stuff she would need to live on her own.Thought that was that - give them a good start and send them on their way, right? Maybe. But ... the first year she not only lived in the dorm, she also had a meal plan. So nothing to worry about as far as being fed or housed.

The next two years in the dorm, we skipped the meal plan (not worth the money) and for the first time in her life, she had to worry about actually feeding herself.

Fast forward to this year.

Now she not only needs to feed herself, but also to pay all those mundane every day month expenses like rent, power, tenants' insurance, etc.

I found myself shopping again before she moved into the new apartment. I mean, the place needed to be furnished, right? A nice lamp for the living room, some stuff for the kitchen. Wait a minute, I thought I had already been there, done that. After all, hadn't she moved out three years ago??

Yes. And no. In at least two different ways.

First, I think (hope, perhaps naively) that she is now officially adulting (as she likes to call it). Incidentally, there are some hilarious memes on FB about this process. Funny, how it didn't seem to be that big a deal for my generation (just something you went and did), but for these guys ... seriously?

There are at least two popular songs on the radio that attempt to document how terrible and disconcerting the process of growing us is. Which, they're pretty funny and I rather enjoy them, I must admit. My favourite FB meme goes something like this:

"That moment when something bad happens and you run to find an adult. Only to realize that you are an adult. But you need an adultier adult".

Heh.

But for the second aspect of this growing up and becoming an adult thing, I seem to be the one who has a problem. Okay, maybe not a problem but came to a rather jolting revelation the other day.

Her university is a little over an hour away. The first three years, I saw her at least every three weeks at a minimum. It wasn't planned that way - it was just that between the times she came home (Reading week, Thanksgiving, Christmas, another Reading week, summer, etc) and the fact that I am in Halifax a fair bit for work and appointments, we saw each other fairly regularly. Never thought too much about it; it just was.

And I was amazed to find that (quick, cover your ears) I didn't really *miss* her when she was away. Heresy, I know. Don't get me wrong, I loved having her home and really enjoyed that time with her  but when she wasn't home, well, I was busy living my life. And, yes, stalking her occasionally on FB as a means to check in and make sure everything was okay. As if I could actually tell how things were doing by what she posted.

This year? This year is different.

Not only did she work in Halifax for the past two summers, but she's working part-time now during the school year. And suddenly ... she's not coming home as much. Not over Thanksgiving because of her work and class schedule. Not during Reading week next month because she wants to pick up extra shifts at work. As if that wasn't bad enough, I seem to be in Halifax less over the past few months so not seeing her then so much either.

And it was bothering me. And her Dad. Yes, it was. The part about her not wanting to come home when she could. Until the other day, when  it finally hit me.

When I went to University, I moved clear across the country. From Saskatchewan to Nova Scotia; 4,379.4 km, for those that are counting. That's 2,721.2 miles, for those that are metrically challenged (which I must admit, I still am somewhat myself).

I called my mother mostly late at night (or was that very early in the morning?) after I had been out partying, had too much to drink and suddenly had a truck-load of perceived dilemmas that only my mom could help with. Other than that, she wrote once every few months (yes, Virginia, there actually was a time when we survived without email) and I sent a humorous greeting card every so often - used the card technique because there was only so much space to write in, unlike a letter, where the amount written would have looked pathetic (compared to what she wrote) on a full sheet.

The Kit Kat, you ask?

Yeah, I realize now that she is just acting/doing as she is meant to. Growing up, becoming an adult, leading her own (gasp) life. How dare she?! And I realized that, although I would still really like to see her more often, I'm okay with the fact that I don't.

Unfortunately, the same cannot be said about her father. He is constantly calling her (and getting annoyed when, the majority of the time, she doesn't answer her phone). I tried pointing out to him today what I had recently realized and even asked him how often he had called his parents when he moved out West for a few years at age 16. Not so sure I got through to him, though.

So, in addition to pointing out that the Kit Kat is now starting to lead her own adult life, I commented on the difference between her and the Blue Jay (the Kit Kat's older sister). Due to her disability, the Blue Jay, even though three years older, still needs us, needs to talk to us daily and needs to see us at least once a week. I pointed out that if the Kit Kat acted like her sister does at the moment, then we would have a real problem.





** For anybody wondering about the "strong-willed child" reference, let's just say ... she was.

A Letter From Heaven

Not sure if she's in heaven or not, but otherwise ... picture perfect.

I miss you, Mom. Always will.
 


It seems appropriate somehow that this popped up in FaceBook feed today.

I was just cleaning up some stuff around the house and found Vicks Vapour Rub (I haven't used it since long before I became an adult, so it must have been my Mom's) and a bottle of her Oil of Olay, which I don't use, but kept anyway. I don't know why ... okay, maybe I do, but ... I don't know why.

It will be nine years in a few short days (Nov. 29) - time to throw this stuff out and move on?

Perhaps, but that's okay ... I still have two of her dresses hanging up downstairs.

Time Passages

I suppose I could have just as easily titled this post "Transitions", but "Time Passages" sounds a little bit fancier, don't you think?

Whatever, I like it. And whether you call it time passages or transitions, there does seem to be a bit of that going on around here as of late. When I think back to this time last year, I couldn`t begin to picture where we are are today.

Last August, we (myself and two other families) had just started negotiations with the Department of Community Service for the Blue Jay and two of her friends (young men she has grown up with and who are in Special Olympics with her) to live in their own home, with the support they would need to be successful as part of a government pilot project.

Those negotiations were long and painful - nine months long, in fact, and nearly as painful as giving birth to a baby. But by the end of December, we had a lovely house rented and the three young adults were able to live there on weekends; unfortunately, only weekends at that point because we didn`t yet have the government funding to do any more than that.

But then, as of June 1st, the Blue Jay and her friends have been living in their own home full-time five days a week; unfortunately, we never did manage to get enough funding for them to live in their own home full-time. The other two days per week, the young adults return to their family homes.

For the past two months, there have definitely been a few huge bumps along the way - it`s definitely a process and we`re learning as we go (both the young adults and the parents). The beauty of this, though, is that it is neither a group home nor a small options home - in both those situations, you are placed in the home with other adults, often strangers. Instead, the Blue Jay has been able to choose her own roommates.

Another major difference from the old way of doing things is that we don`t have staff; instead, the Blue Jay and her friends are supported by ``house buddies``, who, for the most part, are pretty much peers (chronologically) - thank goodness for our local university and its SMILE program, which pairs up interested students one-on-one with children and youth with special needs. The Blue Jay has been in the SMILE program since she was 3 or 4 years old - in fact, that is where she learned how to swim (and she`s quite a good Special Olympics swimmer) without any formal lessons.

Last but not least, the house is not being run by either the government or a private agency - we, the parents, are the home`s administrators. Trust me, that can be both good and bad, depending on the day. It`s a lot of work for us, but an ideal situation for the young adults. Or, at least, hopefully it will be once we finally get all the bugs worked out.

Life has not always been easy for the Blue Jay or for us, her family. It`s been a long, often hard road at times, but she is finally getting some of that independence she so desperately wants and needs.

By the way, did I ever mention that she is also working part-time (two days a week) at a local Tim Hortons, something she has wanted to do since was a little kid? She also does some volunteer work and in one of those places, she gets to run a cash register in a small second-hand clothing store - something else she has wanted to do since she was little (run a cash register, that is).

So there`s that.

And then last, but very far from least, is the fact that we moved my youngest daughter, Kit Kat, to Halifax and into the dorm at her university of choice.

It's so hard to believe that my baby is starting university. Definitely mixed emotions there - proud, nostalgic, a little worried and a little sad; not much different than those faced by any parent who sends one of their children off to university for the first time, I suppose.


I am very, very proud of my two girls. They both continue to face challenges, but they have grown into amazing young adults and, in many ways, those challenges have helped shape who they are today. I guess we all must have done something right.

Three Weeks Years On

It's hard to believe that it's been three years since I've heard Lex's voice. Actually, in some ways, it feel like much longer.

March 6th was the appropriate date - the anniversary of that sad event. I should have written then, I suppose.

But you see, March 6th is also my youngest daughter's birthday. And, interesting story there - on the first anniversary of Lex's death, I was painfully aware of these two polar opposite events occuring on the same day. On the second anniversary, the fact that March 6th was both the Kit Kat's birthday and the day Lex died was most definitely on my mind from the moment I opened FaceBook. But this year was different.

My baby turned 19, you see (and, by the by, what the hell is up with that?!) and, I am sad to say, the fact that it was also an anniversary of another, much sadder sort slipped my mind. Slipped my mind until I read a Face Book post written by a good friend who, appropriately, I never would have met but for Lex. And then, once again, I experienced that jarring sensation when that juxtaposition caught me unaware and struck me hard - the date my baby was born was also the date that Lex died.

I am "lucky", I supppose, (if that be the right word) ... yes, I *still* miss Lex; but, perhaps not to the depth, to the degree some do. I refer not, of course, to to his "real world" family and friends (no contest there, I am sure), but rather to the more faithful (for lack of a better word) Lexicans, as witnessed on the Neptunus Lex Super Secret FaceBook page.

I still read semi-regularly over there (if reading the first four or five posts at the top of the page a few times a week counts as semi-regularly) and pop up with a comment or post occasionally (okay, very, very occasionally), but ... actually I kind of wonder how people (not just my NepLex friends but all my FB friends) manage to find the time to spend as much time as they seem to on social networks while still meeting the other obligations and needs (including their own) that our reality entails. But that be another story for another day ...

At any rate, I just popped in here to say .. what?

Hmmm, strangely I don't really know. Perhaps just to state that not just as is so evident on the Nep Lex page and elsewhere on the interwebs, Lex is still missed by many significantly quieter voices in the blogsphere (including those who can really can only be counted as semi-irregular regular bloggers, at best).

Fair winds and following seas, Sir ...

Never Forgotten

A FaceBook post by a friend really struck home tonight. She was reposting one of Jann Arden's posts that started like this

I had a break through of sorts a few days ago, right after I had a mini 'breakdown'.... I asked my mom if she thought she would ever forget me and she said, "Well, my brain might, but my heart won't". Those eight words took my breath away. 

"Well, my brain might, but my heart won't " ... those words really struck home for me.

When my Mom was so sick and struggling with dementia, I was very lucky in that there was only one occasion when she didn't know who she was when I came to visit in the hospital.

I bustled around the room, doing my thing and yakking away and suddenly realized something was off. So I sat down on the side of the bed and asked if she knew who I was. "Of course I do" she replied. "No you don't". "Yes, I do". "Okay then, who am I?". The moment of truth ... she looked at me with such peace and warmth in her eyes and simply said "someone who loves me very much". I still tear up just to write of it.

A few months later, after popping up to the hospital for a quick unexpected visit one evening, I told her that I had to leave to pick up my youngest daughter (insert name). It had been a particularly bad day for Mom (they had moved her to another room and her mind had just totally shut down) so when something didn't seem right, I asked "You remember Kit Kat, right?" "No, I don't think I do... ".

I took my daughter's framed school picture out of the closet where they had put it after the move and placed it in her hands. "Now you remember Kit Kat, right?". "No, I'm not sure". I left her with the picture, dropped the subject and started talking about something else. When I turned around and looked at her, she was repeatedly softly stroking my daughter's face on the photograph and once again she had the most peaceful look about her.

When I left that evening, she told me that she had been so afraid that I wouldn't find her because they moved her to another room. I replied, much like you would to soothe a child's fears, that no matter where they moved her, I would always find her. She stopped, seemed to consider that for a moment and then responded, "Yes, yes, I believe you will". Her face visibly relaxed when she said it.

I still miss my Mom desperately even though it's been over six years since that horrible day. But remembering (and writing about) moments such as these, while they pull my heart strings and bring tears to my eyes also bring a smile to my face (albeit a sad one) and a feeling of warmth.

On that note, I came across this poem shortly after Mom died. It, too, spoke to me, which was surprising because I am really not a poetry person.

Which, yeah, I believe I shared that with you before. But maybe I'm wrong, maybe, just maybe when it comes to times of loss, I am. At any rate, I will bid you a fond adieu and leave you with this poem.

And the sentiment that, no matter what, I am so glad that I have this blog that has captured, in perpetuity, such important moments in my life. Because even in reliving rereading such terrible moments of pain and hurt and loss, I can still find love, warmth, (occasionally humour) and a sense of connectedness.

Death is nothing at all, 
I have only slipped away into the next room. 
I am I, and you are you. 
Whatever we were to each other, we still are. 

Speak to me in the easy way you always used. 
Put not difference in your tone, 
Wear no forced air of solemnity or sorrow. 

Laugh as we always laughed at the little jokes we enjoyed together. 
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was. 
Let it be spoken without effort, 
Without the trace of a shadow on it. 

Life means all that it ever meant. 
It is the same as it ever was, 
There is unbroken continuity. 
Why should I be out of mind because I am out of sight? 

I am waiting for you, for an interval, 
Somewhere very near, 
Just round the corner. 
All is well.

Nothing is past.
Nothing is lost. 
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting when we meet again!"

And So This is Christmas ...

Christmas is, hands-down, my favourite holiday on the calendar. Maybe (most likely) it was the fact that we didn't celebrate Christmas when I was a kid that accounts for a lot of my delight and enjoyment now.

So what is my favourite thing about Christmas, you ask.

This might sound rather strange, but what I love truly love about the season can be summed up in very few words ... I think in large part it`s the beauty, the visual appeal of the season that really gets to me.

True enough, when my daughters were younger there was a great deal of pleasure and fun in watching their response to the run up to Christmas and their full on excitement on Christmas day. It was both contagious and priceless.

There were also family traditions that developed over the years that gave me a warm, comforting feeling. And, as a parent, I appreciated the chance to try to model and teach to my children in various ways that there truly is more pleasure in giving than in receiving.

In fact, to this day, I would love to adopt some little ones just for this time of the year, to share the magic with them, to watch their faces light up with delight and excitement, to be a part of that again.

But what I really appreciate about Christmas now is the sheer beauty of the season. I could easily sit for hours, staring into a Christmas tree, letting my mind simply roam free and I absolutely love adore the sparkle of lights shining on the snow, the spectacle it creates.

You might have figured out by now that despite the fact that, perhaps, it *should*, Christmas does not have a strong religious connotation for me. I credit that with the fact that I grew up as a Jehovah's Witness and even though I am very much not one now, there seems to be some core beliefs (doctrinal points) and values that stick with me. Okay, in all honesty, not just stick with me but by extension, exclude the inclusion of other things.

Yes, to me, Christmas is more or less a secular holiday, but from my point of view, that diminishes its importance not one bit. Because whether your view be religious or secular or some mixture of both, the Christmas season is a time for family and friends, a time to bring your family close around you and hold them tight, a time to take a break from the insanity that is life and refocus on what is really important.

Yes, I adore the Christmas season.

The only problem is, I can never figure just why, exactly, it has to end.

My Life Story

HAPPY BELATED CANADA DAY!!

I hope you and yours enjoyed a great one.

As for me and mine, I am happy to report that Yours Truly managed to not just celebrate our great country and spend some bonding time with my youngest daughter, but I also dotted all my i's and crossed all my t's ... that's right - I finished up the last of the paperwork necessary to finalize the change back to practicing status.

So please welcome my firm, MMC Legal Services, into the big bad world. And spread the word, this particular firm only serves the disability community.

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

Whazzup, Buttercup?

Hey there all you hale and hearty fans of Free Falling. How goes it?

Whoa, settle down, settle down, all questions will be answered in due course.

1.  Yes, yes, I am still alive - thanks for asking!

2.  And yes, I have been busy. Very busy, in fact. My, aren't you all a discerning lot.

3.  Well, if you really want to know, I mean if you insist.

Sorry, I can't seem to hear you.

. . .

 . . .

Ah, there you are. Very well - I have been (amongst many other things) preparing for my return to the (part-time) practice of law.

4.  Preparing what? Seriously?? 

5. How's about my office space? My brain? My accounting system? My life? And that's just for starters.

6.  Oh, really, you want to know when?

Very well, that would be ... drum roll please ... wait for it ... July 1st.

7.  Why, yes, that is Canada Day (quite an impressive lot you are, I must say).

8.  No, no, that is only a coincidence. Trust me. But never fear, we shall celebrate both Canada Day and my official return to the practice of law in fine style. That, my good friends, is a promise.

9.  Seriously? You want to know what *other things* I have been up to? You mean this is not enough? What is wrong with you people? What more do you want from me? Blood??

10.  There you go, getting all upset again ... now everyone back in your seats or I won't be saying another word.

. . .

That's better. Now where were we? Crowd control can be sooo taxing at times ....

11.  Sheesh, no sense of humour, this crew. And, just for future reference,
No. 
Further. 
Booing. 
Will. 
Be. 
Allowed.

12. Are? We? Clear?

13.  Very well, I will give you one little example of some of those *other things* I have been up to.

14. How about preparing for the high school graduation of BOTH my daughters? Is that good enough for you?

15.  That's right, I said BOTH my daughters.

16. Right, again. Both those graduations will be held this very month.

17.         ...

Sorry, I've just been advised that we're out of time for today. I regret to inform you that no further questions will be taken at this time.

Thank you very much for attending and please feel free to drop donations of any denomination (the bigger the better) in the tip jar on your way out.

What's that? There is no tip jar?

Damm ... I knew I forgot something!

. . .

Buttercup has now left the building.

[Almost] Street Legal

Posted on Facebook on March 6, 2014 

Lawyers need trust accounts.  

But according to the bank, in order to have a trust account, you need a business account first.  

And to have a business account you need to have registered a business name. [check] 

But before you can register a business name, you have to have the name approved [check] 

So, two out of four ain't bad for one week.

And I have a date with the banker on Monday to open the business account.

The name, you ask? Oh, that's easy.

MMC Legal Services

Of course.    :D

Cross-posted on 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.

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.

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.

To Dream the Impossible Dream

It's been eighteen years since I've practiced law. That's right. Eighteen years.

Long time, no?

You see, I've always said I wouldn't go back to practice unless I could have just a "disability" practice.

In other words, not unless I could only take cases involving disability-related issues. But considering that most families with a disabled family member can't afford a lawyer and I figure that it will likely take Nova Scotia a good 20 years to get to the point where the government helps subsidize the cost of legal representation for families ... I just wasn't feeling the love.

But for the past year or so, I've been playing around with the idea of doing just that ... going back to the practice of law. No, I hadn't given up on what I really wanted or lowered my standards. Nor was the thought born out of desperation.

But I had finally come to realize (with a little bit of help from some friends) that I could use what I have been doing with the NS Legal Guardianship Kit and the presentations on disability-related topics as a springboard.

What if I went back to practice? Just on a part-time basis?

What if I could offer people the option of either purchasing the Guardianship Kit or hiring me to bring their guardianship application? Not only would my fees be significantly lower than the majority of lawyers' but I had also started to develop a reputation in the disability community. People were already asking if they could hire me to bring guardianship applications and I had to explain that no, I wasn't practicing.

So it was that I've been playing around with this idea for a while now.

Tried to talk myself out of it ... after 18 years of not practicing, just how many hoops would the Barristers' Society make me go through before granting me practicing status again? For a while, that seemed like a good enough reason not to proceed any further.

But eventually I realized that I might just be staring in the face (and yet not seeing) exactly what I have been looking for so hard for quite a while now - having convinced myself that I would never go back to practice because, after all, who could financially survive financially with the type of practice I wanted, I had been thinking that maybe the solution was finding work for a disability organization in a position where I could use my legal background and training. But that opportunity simply was not presenting itself. Although, in all honesty, I had come across what looked like the perfect job a few years ago. There was only one problem ... it was in BC. As in clear across the other side of the country. So, yeah. Not so much.

And yet this has been my passion for so many years now - how long have I been telling people that if I could find a way to marry law and disability (and get paid for it), I would be truly happy? Trust me, a long time. Said to a lot of people.

And so it was that eventually, very slowly, light began to dawn on marblehead (that would be me, in case you were wondering) and I "made the decision" (well, kind of, sort of anyway ... who says I'm not decisive?*) to take the leap and return to practice. 

The only problem was that required applying for a change of status (and forwarding the appropriate application fee) to the Bar Society, who would review my application and then tell me what hoops I would have to go through.

Now, really, that change of application fee would be hardly significant for most people. It shouldn't have been a big deal. And yet once I (kind of, sort of) made the decision to go back to practice, there just wasn't any money to spare to make the application. And then every time I planned on doing it (as in as soon as I get paid for ... whatever), something would happen and the money would be demanded elsewhere.

Oh what a tangled web we weave ....

Anyway, on a different note, guess what I did today? Come on. Guess.

No, I didn't finally *find* the money for the application fee.

No, I didn't finally start the required paperwork.

Give up? Are you sure?

All right, all right. I will tell you.

Listen carefully now.

  

(crickets)

Today. I. Mailed. The. Application.

(With. The. Cheque. Of. Course).

To. The. Bar. Society.

(more crickets)

Proud of me? I am. 

Proud. And excited. And more than a little nervous.

And so it is that the adventure continues. Wish me luck!

* In my defence, I did have a few good personal reasons for hesitating about taking the plunge. One being my health. But, hey, why let a little thing like that stop me, right? I figure if I don't try, I'll never know.

World Record

I think we just set the record for the world's shortest IPP meeting. Ever. Well, at least the shortest one I've ever attended in 15 years of being involved with special education.

The funny thing is how I walked out of the world's shortest IPP meeting feeling quite good about the whole thing. Better than I have in the past 3 years of IPP meetings, in fact. And that after half an hour as opposed to the usual 1.5 - 2 hour meetings.

The reason, you ask? Might shorter, in and of itself, actually be better?

No. No, not at all. In fact, we have another IPP meeting scheduled for next week (minus the subject teachers who were present today but with the addition of the autism specialist) that I am sure will run much closer to what I am use to.

No, here, my dear friends, is the difference. Today's meeting was (finally) chaired by a Resource teacher that gets it.

Previous Resource teachers, although extremely experienced, who should have (and, no doubt, did) know their stuff, were so stuck in their ways of doing things that there was absolutely no room for anything different.

Did I mention there was no room? Because, really. There. Was. No. Room.

I'm sorry, but the term dinosaur does come to mind. While they may have been very good at what they did many years ago, they clearly couldn't (or, I'm thinking, more likely wouldn't) adapt to the times. It was their way. Or the highway.

But our current Resource teacher, while relatively new to "Intensive Resource", has family members with disabilities and he really seems to get it. To get the importance of life skills for a young adult like the Blue Jay. To get the importance of life skills for so many of the students in that class.

I can actually see him building a resource program that will be so much better than what this school previously had. I can actually see it benefiting so many more students. My only real complaint is that the Blue Jay didn't have access to such a program three years ago, when she first entered high school, as she should have.

Well, that and the fact that when our previous dinosaurs teachers ruled the land, nobody (and I mean nobody) seemed to have any issue with the way things were done or the way they insisted things had to be done. They were backed up all the way.

Nope, nobody had any issues with them. Nobody except me, that is.

Interestingly enough, now that they've retired, I am finding people starting to agree with what I've consistently been saying (and thinking) for the past couple of years - that things didn't have to be (and, in fact, shouldn't have been) done their way. That, dare I say it, these particular teachers were the problem.

Apparently, now they are. But then they weren't. Go figure.

Not Meant To Be

There was absolutely no doubt when I stepped outside on Sunday - we have definitely entered my favourite time of the year.

I love Fall; the shining sun; a clear blue sky; warm, maybe even hot but without that summer heat and humidity that sucks the life right out of me; and, of course, the beautiful colours. What more could a girl ask for?

Well, one tiny thing perhaps ...

We live in the beautiful Annapolis Valley, well-known for its agriculture and bountiful crops. A little less well-known, perhaps, for its wineries. But we have those too.  Three, in fact, within a 15-minute drive from my place.

And yet ... and yet, I have never even been to a winery, let alone toured one. And that is something I have always wanted to do.

No excuse, really. Once or twice every year, the wineries are open for tours. And, of course, wine-tastings.

Yep, you guessed it - Sunday was one of those days.

Open Farm Day they call it. Come out and see where your food really comes from.

I must confess I am a littles less than interested in seeing where my food comes from. I mean, I ain't no city slicker, I live in the Valley ... I know exactly where my food comes from for heaven's sake.

But if you're suggesting that I should come out and see where my wine really comes from (while I taste some of yours) ... yeah, I could go for that. I mean, I wouldn't want to be rude, right?

Alas, it was not meant to be. 'Tis to weep.

I tried. I really did. But apparently first we had to go visit Farmer John's Farm (I kid you not - its real name) where summer savoury is grown. Yep, summer savoury.  Which, surprisingly, was interesting. In a strange sort of way.

But then ... then it was my turn. Right?

Sure. Kind of. We headed out to the Muir Murray Estate Winery.

A beautiful day.  A gorgeous spot.

And yet, as I said, apparently it was not meant to be. We arrived at 3:30 and the last tour was at 3:00. We even (just) missed a hay ride, which although not really my cup of tea, would have taken us through the vineyard.

Thwarted again!

There was still the wine-tasting, of course. 

Too bad that I wasn't particularly fond of any of the wines that I tried. Equally too bad was the fact that the one wine I would have really loved to try cost $5 for a "taste".

So, yeah. Thanks. But no thanks.

So that was that. Until I got back home, of course. Where I promptly had myself a glass of wine. What do you expect? Hey, I was craving the stuff by then.

They're trying to tell me that we will always have next year. But, really, just how much wine will I be forced to consume while I'm waiting?