Monday, April 21, 2014

Spring Clean Up

I'm a gardener.

Every year, the promise of spring is what gets me through the winter.  There are some awfully long snowy days up here in the Great White North... which is probably why we are called that.  But, every year spring arrives, the snow first melts to reveal snirt (piles of snow+dirt) and then just dirt, which is then washed and blown away by spring rain and wind.  Little green things start poking up through the ground and if I haven't already, I start thinking of planting vegetables and what flowers I would like to try this year.

This year has been different.

The winter of 2013/2014 has been plagued by more-serious-than-normal weather.  Floods in the summer gave way to ice before Christmas, more ice after Christmas and snowstorm after snowstorm after snowstorm.  Some people were without power for the entire holiday season, during which we had ridiculously hostile low temperatures with face-ripping wind chills.  In a literal sense, it has been a hard winter.  In a figurative sense there has been higher than number heart attacks, falls and mental health issues, in no small part due to the weather and it's implications. This year the snow melted to snicks (piles of dirty snow filled with sticks) and then dissipated to twigs and dirt, the remnants of which are still being discovered and cleaned up city wide. 

I have not been immune either.

As I stated earlier in my What's Up? post, this winter has been hard on me too.  I've had to re-evaluate everything I do, from how I brush my teeth to how I get ready for work to how I go to bed to how I organize myself and the family.  I've had to actively change my thinking, which is a story for another day, but understand that it has been no picnic.  Those few that are closest to me can testify to that.

That is a story for another day, as frankly it is still going on.  As a mental health professional, it is my responsibility to end stigma.  As a blogger I've been nothing but honest... but I'm not ready to tell that story fully yet.  I will, and in my own way:  loudly, proudly and without a twinge of regret.  Again, that time is not today.

Instead, I'll talk about gardening...

Today the temperature went up to over 20 degrees Celsius, which in Canadiana means SHORTS!  Although I did not feel like doing anything other than crawling back into bed, I made myself go out to the front yard and start cleaning up the garden.  Its not a grand thing, but a friend and I designed it at work one night and Sean and I then built it two summers ago.  The gardens themselves were covered in dried leaves and maple keys that had blown up the street and been trapped, along with occasional bits of paper and garbage.  The lawn was covered in assorted twigs and branches and pine cones that had not been picked up yet.  Stones that had lined the side of the driveway had been heaved up by countless shovels onto the lawn and the gardens and the remnants of last falls foliage--that in my illness I had not gotten to--either lay flattened on the soil, or dryly poking up at odd angles.  It was a mess.  And so was I, with my hair coiled up in a greasy bun on the top of my head.  Wisps were sticking out at random and I managed to nail the more annoying ones down with barrettes.  Finish the look with my ugly-ass gardening shoes, standard black T-shirt and capris and shades and you'll understand what shambled outside.  I had no desire to start this project.  I had no desire to do anything.  I got the paper yard bags out of the back of the truck, put on the bright blue gardening gloves that were on the shelf in the garage (after first shaking them for spiders), put my headphones in and started on the leaves and trash that was under the porch.

The porch cleanup yielded an orange matchbox car, and cleaning up around Dog (our one gargoyle) helped me find all the painted pots that Quinn and I did a couple of years ago.  We lost one, but I set the rest carefully up on the steps.  As I started work on the garden proper, I was not sure what I was going to find.  With all the salt and sand and de-icer that ended up on the lawn and garden, I was not convinced I would find anything alive other than the occasional maple sprout under the debris.  As I cleaned and aerated and smoothed the soil, I started to find shoots here and there.  This will be a trillium in a few weeks.  This one here will be a hosta. This stick has shoots on it and will be a tree peony;  maybe this year it will even bloom.  These are some of the giant day-lilies that surround Pazuzu (our other gargoyle).  Yes, there was more things that I did not find than I did;  it's possible that they have not started yet or the winter claimed them.  The jury is still out on the burning bush I planted last year.  But, the lavender is starting to green up and even the dead leaves offered heady fragrance as I cleaned out every last bit of detritus.

As I broke off last years lily stalks and yanked clumps of rouge grass out of the gravel path, the fresh air and sunshine worked it's usual magic.  Even the marble shards cutting into my knees hurt less as the breeze ruffled loose tendrils of hair and some of my favourite songs filled my ears.  It was my hands in the earth however, that renewed a sense of connection.  I pulled my gloves off and smoothed the soil by hand around some hosta shoots.  It felt good to be alive and to be connected to the earth, a feeling that has eluded me for so many months.

I continued my work with a half smile on my face, picking stones out of the soil, putting dead leaves and twigs in my bag and was about to pick up another rock when I stopped to look at it.
[Image description:  heat shaped stone half buried in soil, with maple sprout above.]
Sometimes Nature smiles back.

I guess I told you that to tell you this:  it has been a long, difficult journey to get to this point.  I have not been up to my usual levels of presence and advocacy as I have been advocating for another cause:

Me.

But, much like the sprouts I uncovered today, there is hope.  There is promise, even if some days I have to work hard and dig for it.  Some days come easy, and some leave me battered, exhausted, covered in bruises, sweat and dirt.

It is hard work.  Hard.

When this is all over, I hope to end it the same way I ended my time outdoors:  with a cold Coke, in my Muskoka chair on the porch, the sounds of my kids playing filtering through the open window.  Until then, each task is undertaken individually.  Each day comes in it's own time.  Growth happens where it can, and sometimes I can clear the way for it to happen.  Sometimes it comes all on it's own and yields unexpected surprises.

It's time to clean up after this long winter.  I think today was a pretty good start.

Welcome to the T-21 Blog Hop - April 2014

When I resurrected the T-21 Blog Hop last October, I did so with the idea that regardless of whatever month or theme I had chosen for a particular 'hop, it would always be open for pure advocacy posts.  That has not, nor will it ever, change.

This month, there is a lot going on in the various disability communities.  Instead of picking a topic or jumping on a popular organization's bandwagon, I'm going to let the posts and their authors speak for themselves. 

If I had to pick a topic to go with April, I'd say "Acceptance" or "Advocacy".  Both of those begin with A, right?  However, truth be told, those should be the themes for every month, as they are the drum beat that spurs folks like the ones you are about to read, on.

Shower us with Acceptance and Advocacy posts.  It is April after all...


Thursday, April 17, 2014

Happy Easter!


(What?  You thought we'd forget Mr. Bones?)

Thursday, April 10, 2014

Circle of the Sun

"Babies are born in the circle of the Sun
Circle of the Sun on the birthin' day
Babies are born in the circle of the sun
Circle of the sun on the birthin' day.
Clouds to the east, clouds to the west
Wind and rain to the north and south
Babies are born in the circle of the sun
Circle of the sun on the birthin' day..."
-Sally Rogers, Circle of the Sun (Children's song)


It's been a year.

One year ago today Wyatt had the surgery to repair his heart.

Although I often find myself agog at the passage of time, this milestone in particular holds a great deal of significance.  That was the day that the surgeon corrected the blood flow in his heart, sure.   It was also the day that the ever present fear of discovering my child blue and in congestive heart failure was removed.  It was a day of transformation for my little boy, as the ruddiness that appeared in his cheeks and the rosy glow that his skin took on heralded the increased oxygen to all his cells.  More energy, more movement, more development.  More life.  It was simultaneously the first day of the rest of his life and singlehandedly the worst day of mine.

Those that truly know me well know that there very little that frightens me.   Call it world weary, call it educated, call it what you will, but even my own death will come when it does.  There was a brief period last September when I was being investigated for a bunch of things, including liver cancer, which if discovered, would have put my life expectancy at around three months.  "Well, this fucking sucks..."  I thought to myself, having used up what could have been the first month in diagnostics and being very ill.  I was not fearful about my possible death however, just sad that I would lose my children.

It's a completely different story when the life that is threatened is your child's.

They say that a little bit of knowledge is not always a good thing and in this case I tend to agree with them.  I often wonder if knowing what I know, if being a nurse and coming from the background that I do if that made this whole experience more terrifying.  If ignorance, in this case, might have provided a little bit of bliss.  I'll never know for sure I guess, but it has provided fertile thought for many of the sleepless nights that followed. 

I've tried to explain to many of my childless friends and colleagues what it is like (for me) to be a parent and I still don't think I've gotten it quite right.  I have yet to find the words to easily describe the overwhelming fierceness and tenderness that grips you.  How your vision narrows at a perceived threat, how all prior knowledge, fact and experience merrily flies out the window as the emotion, as whatever this motherness is, rushes over you.  Physiologically your body responds and goes into crisis mode.  Mentally, you bare your teeth and are ready to fight to the death.  Over a skinned knee even.  There was no "crying it out" for the babies in this house, as hearing my children cry is pretty much tantamount to torture for me.  I cannot bear it.  I will not.

Twice I've handed over children to a surgical team, once when Zoe was six weeks old and still small enough to be tucked into my shirt.  With her it was sheer protectiveness;  this little girl that I had just had gotten home and started to get to know I was now giving back.  For a minor thing yes, but the thought of her tiny fragile person in any sort of danger superseded any logic or reason.   Wyatt's surgery, naturally, was so much bigger.

In the days leading up, we were told of the risks.  Every aspect of the surgery was explained, detailed and explained again.  We knew what to expect.  We knew what scenarios could arise.  We knew what complications could occur, including a very real, statistical possibility and the only one that preoccupied my thoughts:

Death.

Thankfully, that did not happen.

I detailed his hospital stay, a time whose details and edges have been worn down as if by water.  Those days, those days of constant "go mode", where tasking took the place of actual thought and feeling are long over.  In their place is a robust little boy, who rushes wide-eyed through his day as he vocalizes his joy and frustrations and fights his sister for toys instead of the sleepy little baby in the crook of my arm or riding on my hip.

The transformation was immediate once we got him home.  Prior to the surgery, he was commando crawling, standing and learning to creep on all fours.  With a sore chest and ribs that were barely wired together, naturally that could not happen.  I think it took him a full day of sitting in the middle of the floor, folornly watching his siblings buzz about before he figured out he could "scoot" along to get where he needed to go.  He had to relearn to stand, to use cutlery (he's still working on that one) and to relearn the signs that he had known prior.  He has done this and more.  He is still not walking, but that is not a big surprise to me at least.  Ask anyone who has open heart surgery and they will tell you that up to a year or so afterwards your chest feels weird. Every time you move, every time you cough or sneeze, you swear things are moving around in there that shouldn't be.  Now that we are at the year mark, he is crab walking and learning to stand on his own and it won't be long before he walks on his own unassisted. His hesitation to try new things has disappeared too as he has healed, which has made him bolder, more brazen like his sister.  Which is fantastic and horrifying at the same time, and serves to give me more grey hair every time he falls off something.

In the time it has taken our planet to circle around the sun once, this whole experience has become something that happened in the distant past.  Sometimes it seems like it happened to some another family.  Sometimes I will come across a story or a event or even a smell, and certain aspects will be called up in glittering detail before me.  I'm told by many a parent who has been in the same place that this may always be the case... and I'm okay with that.  Mainly as my son will have many more circles, more discoveries, more developments, more life.  As the song goes, there will be circles for learning to walk, learning to talk, learning to navigate through this world.  Next February the twins will be registered for kindergarten and we will set up our first IEP.  Half a circle later they will have their first day of school and embark on the next stage of their lives.  There will be wind and rain and storms and all sorts of things that blow into our path, and I do not have the foresight to predict what each new year will bring.  But I know, as I write this, as a little face appears at my side and a chubby fist tugs at my elbow while saying "Up!", that we have made quite the journey.  His arms are around my neck and his hand gently pats my shoulder as I type this one handed.  I will walk him across the sun warmed floor boards in a moment and praise his attempts to wave my hands off.  But for now, I will kiss his forehead and he will gaze at me wisely before hugging me tighter.  We have come a long way, this child and I.

Full circle, even.

Wednesday, April 9, 2014

In the News - March 2014

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page.  These are from March 2014.


Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
CASE indicates a lawsuit or proceedings
EVENT indicates a scheduled event
IMAGE indicates a graphic, image or comic
LAWS indicates a new piece of legislation
LINKS indicates links or resource materials
PHOTOS indicates photos
POLL indicates an online survey
POST indicates an advocacy statement made through social media
PRESS indicates a press release
QUOTE indicates a meaningful quote
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie clip
VLOG **NEW** indicates a video blog post


EVENT
Day of Mourning 2014: Remembering People with Disabilities Murdered by Caregivers - Virtual Vigil



The ‘Boys’ in the Bunkhouse

VIDEO

POST
BLOG
A Fair Shot

BLOG
World Down Syndrome Day
BLOG

BLOG
Why I Didn't Wear The Socks
BLOG
Surviving the "Sounding The Alarm" of Blue Fear - I Won't Be Lighting Anything Blue April 2nd
BLOG
BLOG
BLOG
Awareness to Acceptance:  It's a Process
IMAGE
"If you refer to someone as Autistic...it is automatically accepted as being part of who they are, rather than treated as something which can be separated. Autism isn't..."

Teresa's passport to a new life with Down syndrome
BLOG
Unnecessary Dominance

This breathtakingly gorgeous eyeshadow is called "NEURODIVERGENT"
POST
IMAGE
IMAGE
Neurodiversity

March also saw another edition of the T-21 Blog Hop...


Thanks to all who participated.

The T-21 Blog Hop will take place every month on the 21st, for three days and will continue to feature advocacy posts from across the disability community.


...And that's the news.  Keep the stories and information coming!

Friday, March 21, 2014

Welcome to the T-21 Blog Hop - March 2014: World Down Syndrome Day

Today is World Down Syndrome Day, a day that we celebrate those with an extra copy of the 21st chromosome.

Our festivities however, always seemed to be tinged with a note of sadness, as those with Down syndrome and other intellectual disabilities continue to be discriminated against in all aspects of life.  From our everyday common language, to our medical systems, to our laws, to our education systems, we continue to deem those that are a little different as defective, inferior, not worthy.

Life, not worthy, of life.  Although it has been many years since Aktion T4, these eugenics principles still linger.

Of the many little educational factoids that you may read today about Down syndrome (including this list here), somewhere between 5 to 10 percent of those with an extra 21st chromosome are also diagnosed with an Autism spectrum disorder.  The intersectionality between these two communities, and in fact many more as well, is more substantial than you might think.

Join us today for the World Down Syndrome Day edition of the T21 Blog Hop.  Instead of the usual three days that it is open (representing the three copies of Trisomy 21), it will be extended to a full seven days.  Advocacy posts are welcome from all areas of neurodiversity:  whether showing your T21 pride, advocating for a better world for those with developmental delays or asking for once and for all for the world to #stopcombatingme, add your posts for seven days of blogging excellence.




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