Monday, January 13, 2014


I looked at the calendar on the way by this morning and realized it was January 13th.

Holy cats, we're almost midway through January.

How in the blue heck did that happen, I asked myself as I fumbled with the Tassimo.  Between the weather and work and the general carry on... well, it's been pretty much business as usual, hasn't it?

If by that you mean completely all over the place, then yeah.  Sure.

The week before Christmas hit us with an ice storm that downed many of the trees in my city, as well as leaving people without power for days.  In fact, there were places in Toronto that were out of power for up to nine days, making it a very cold and dark holiday for a lot of people.  Having several inches of ice everywhere ensured that I fell at least once a day.  During the middle of the ice storm, I had to walk (run!) through ice coated fallen trees for a block to make it to the next bus stop as my connection point was closed off by police.  I got my cardio in that night as heavy limbs cracked with the sudden violence of a gunshot before smashing to the ground like crystal chandeliers.  At one point it sounded like an enormous monster was after me.  Pop, crash... pop, crash... I was too busy moving to look back (and praying that there was no downed wires in the jungle I was climbing over).  That's an experience that I would not want to relieve anytime soon.  I don't scare easily, but I was still shaking an hour into my shift.

Looking down the connecting street Where is everything? Looking up our street
My 'hood.  Photos courtesy of L. Bonner. 

(Photo Description:  Three photographs depicting the destruction of trees by ice.  Thick limbs 
are broken and hanging, trees are bowed under the weight of several inches of ice)

We were fortunate to be traveling this Christmas and able to escape the destruction for a few days. While we were gone more ice came and brought some wind along.  As you can imagine, when we returned things looked much worse.  Many of these trees that you see above are no longer standing.  The branches have been moved off the sidewalk in *most* cases, but there are still places where the sidewalk is blocked with branches that are now frozen solid to the ground.  Again, we got off lucky as none of us in our area had a tree fall on their house, or car, or themselves.  We also have underground power in our area, so other than a few brief 20 minute spurts, we had light and heat.

Once the ice not-so-follies were over and the traces finally melted, the snow started to fly again.  We got several snow dumps, including one Boxing Day when we were traveling home.  We all started to get a little punchy about the weather and with everyone home, cabin fever set in really easy.  Then, we hit the deep freeze.
Winter is... here.
Winter is no longer coming.  Winter is here, yo.

(Photo Description:  Plastic Hallowe'en skeleton completely
 and creepily coated in ice)
After a few days of that,  I started to feel like I was desiccating, that slowly but surely my lips were pulling back from my teeth and soon I would look like one of those cave mummies that people find from time to time.  I felt like a dried out husk with a red mane of crispy clown hair as I put on my "Darth Mom" coat, Gore-Tex boots, thermal leather mittens and wound a scarf around my neck (and promptly buried my nose in it) before embarking out into Hoth in the hopes of making it to work on time.   I stood out for at least half an hour daily in temperatures and wind that would freeze bare skin in 5 minutes.  At one point it was minus forty Celsius, which is... minus forty Fahrenheit, oddly enough.  Everybody can agree then, it was ridiculously cold.  I danced in bus shelters to keep warm and one night had so much fun imitating Tauntauns while the Admiral and I waited for the Whaaambulance, that I actually hurt my throat.

 photo Tauntaun_zps479eaca8.jpg
Your Tauntaun will freeze before you hit the first marker.

(Photo Description:  scene from Star Wars:  The Empire strikes back depicting
characters Han Solo and Luke Skywalker on a tauntaun.  All are covered in snow.
 Image caption reads "Going to the store.  Need anything?")

Eldest did not return to school after Christmas break until Wednesday... until it warmed up into the minus twenties (!) and we weren't having a blizzard.  The younger two only went outside in a preheated van. Twice.  After several weeks of non-stop winter weather shenanigans, you can imagine that we were all more than a little wonky.  Work was not much better as the volumes and the acuity are astonishingly high.  Having left on our trip immediately after my shift before Christmas and returning to work immediately after our return, our schedule has not allowed for much down time. 

To make what is rapidly turning into a very long story, short:  I'm pooped.  With a capital "Poop".

I've done precious little over the last few days other than play a lot of video games, have the kids crawl over me and stare at one size screen or another. 

Without falling into self-pity, it is hard doing what I do... whether at work or home.  My kids are the easy part, the hard parts are the advocacy bits.  This blog always has and always will be a labour of love;  it's hardly a money making venture and I'm not in this for the book deal or to launch my "writing career".  I already have a career, one I love very much (even when it's trying to kill me), but I must confess, I enjoy doing this thing too.  Most of the time.

I'm just not feelin' it right now.  At.  All.

It could be the haters--there always seems to be a few of them lurking about, always ready to launch into a personal attack when my views/religion/political leanings/country of origin/general outlook on life clash with theirs.  It's hard to take sometimes when some of the worst other-ing comes from within your own "community". 

But, if you look at things objectively, this past year has been one of metamorphosis.  By comparison, in 2011 I wrote about choosing to surge forward through what seemed like a never ending sea of negativity.  In 2012 I encouraged compassion and hope. 2013, by contrast, was about change.  On a personal level, I managed to kick some lingering (and previously invisible to me) prejudices to the curb, realize the privileges I did have, and truly start moving forward into the land of acceptance. It sounds so easy and almost trite when I write that, but it is not easy to stop and recognize that even in your "do no harm" philosophy, you still manage to do just that, no matter how caring your intentions.  Those of us in patient care often think we know best... because we have to.  How else does one perform some of the things that we do without a heavy dose of self-assurance?  You can't.  The danger, however, lies in overconfidence and paternalism... where one decides they "know best" for an adult who is capable, both legally and in actuality, of making their own decisions.  Understanding how deep the rhetoric goes--how our very language is both shaped by our underlying fear and lack of knowledge--and how these states are perpetuated by it, was a big realization for me.  One I can't trivialize with an "Ah-ha".

There have been so many changes globally too.  We have learned how one voice can quickly become many as retailers, publishers and manufactures learned that language that disparages those with intellectual disabilities is not acceptable and will not be tolerated.  We saw a ground breaking case where a woman with Down syndrome, fought for, and won, the right to live where she chose to... a right that so many of us take for granted all the time.  At the same time however, it's been almost a year since the death of Ethan Saylor.  During that time, we have been reminded many times of the still pervasive view of people needing to be "controlled" and how little society still knows, or cares about those with intellectual disabilities.

As a family, we've seen some changes of our own.  In April, Wyatt underwent open heart surgery to repair his AVSD.   Since that time he has had to relearn many things.  He has added many new skills to his repertoire since then, including recently starting to walk with a push cart (or my computer chair), climbing up on everything in sight and a handful more signs that he is using consistently to engage us.  Like everything else, these were all discovered by accident:  I walked into the living room one evening to find him sitting in the middle of the coffee table watching TV.   At my gasp of surprise, he just looked over and gave me the chin lift, as if to say "Sup?" and went back to his show.  All righty, then...

I've had my own health problems this year, we've gone through some bullying with Quinn.  Money waxes and wanes, as do colds and bugs and shifts and mess.  Just like any other family.  That is how life goes.  Change is hard, as they say.  It is also exhausting and as messy as anything else. 

We were cleaning out eldest's backpack the other day, a task that included the discovery of what we can only assume was once half a sandwich, abandoned in the frenzy of the last day of school.  After having a brief discourse with this now rapidly evolving life form, we found a newsletter advising parents that kindergarten registration for children born in 2010 would commence in February.  Sean and I looked at each other in awe as that will be us, next year.  In one year we will be entering the IEP arena, my fears for our District School Board only bolstered by recent experiences by a few families that I know (and a lot of patient families that I have come into contact with).  My children are babies no longer.  In a short time they will all be going to school and a whole new level of advocacy will be added to our world.  There will be tears, sure.  There will be anticipation and angst and more watchful waiting.  There will also be new experience, joy and a whole lot of freedom for all of us. 

Life will continue to happen here, both good and bad.  The bad does not negate the good and the joyful does not erase what is horrible in the world.  In reality, I do not have the luxury to live in a climate where it is 72 degrees every day.  I, being me, do not have the exorbitance to do anything except being in the here and now.  Being present, bearing witness, to both very good and some very, very bad things (that some people wish I would not talk about) and challenging the way society views those that are "different" is who and what I am.  As a mother, as a nurse, as a human being, I wish I could, as one blogger put it, "stick my fingers in my ears and say "la la la la, I can't hear you", and pick and choose what I see.  I wish I could pretend that my kids were superheroes or that Wyatt's extra chromosome is made solely of "♥♥ love ♥♥♥" or that the only disability in this house is my "angry" attitude. But, I can't.  Further to that, I won't. 

Instead, I live where there are two distinct seasons:  winter and construction.  I live in a world where I've got three human kids, not just the one with the interesting condition or two if you count his neurotypical twin.  I don't get to bury my head in the sand or "cope" by churning out inspiration porn and succumbing to the grief narrative.  The society I live in is skewed against people like my kids, where our views of healthy and fit and appropriate don't deviate much from the eugenics dogma of yesteryear.  That has to change.  Disability is a natural state of being.  Neurodiversity and privilege are more than just theories. They are reality.

This year will bring it's own tastes and flavours.  There is, and will be, much joy.  And angst.  And potty training twins with different parts.  And itchy feet and boogers and period cramps and lack of sleep and worrying about the driveway and the lawn and so much coffee.  And love.  And coffee.   Once I rest up a bit, you can bet that there will be a lot of action here and in the other places that I hang out, regardless of what weather the skeleton happens to be wearing at the time.

Doing what I do, living the life that we lead... I think I finally have an answer to "I don't know how you do it."  The answer is the same as to how one lives through the Canadian winter. 

The answer is "well" and with a giant pair of these:

(Photo description:  two snowballs)


  1. Well, I believe it has been nearly one year since I *found* your blog. It is one of the few I chose to list on my own baby website as a resource and one I try to "keep up" on. You, virtual friend, are a rock star. You write honestly and with great craft. Your passions are on your sleeve and you're fighting for more than your family. I *almost always* agree with you and I *always* agree with the need for discussing what you discuss. Honestly, sometimes I wish my style was/is/could be more like yours, but alas, you've got it covered so, I guess it's better this way. :)
    SO - in short, you're a rock star and I wish you all the best to keep rocking it all in the New Year.
    - Mardra


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