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:


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.

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

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

The ‘Boys’ in the Bunkhouse


A Fair Shot

World Down Syndrome Day

Why I Didn't Wear The Socks
Surviving the "Sounding The Alarm" of Blue Fear - I Won't Be Lighting Anything Blue April 2nd
Awareness to Acceptance:  It's a Process
"If you refer to someone as 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
Unnecessary Dominance

This breathtakingly gorgeous eyeshadow is called "NEURODIVERGENT"

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.

A Fair Shot

Other than my monthly wrap ups and the blog hop, I've been taking a needed blogging hiatus.  Rest assured I will be back to this and my other online efforts at some point. But for now, I'm taking some needed me and family time.

Today however, is World Down Syndrome Day.  I could not let this pass by without notice.

Last year, I wrote about some of the issues that I had with awareness campaigns, those for Down syndrome in particular.  I talked about awareness vs acceptance; marginalization by the medical community; inspirational porn and pedestal ableism; derogatory slang such as the R word; and flat out homicide.  I still stand by each and every one of these; they are real issues faced by people with Down syndrome every day, along with their families, allies and loved ones.

Plenty of socks/wacky socks/odd socks may seem like a fun, silly thing to do, to create awareness, but what does it do really?

For the record, I hate socks, especially these horrible things.  *shudder*

Not a lot...   Outside of keeping your feet warm in what has been a god-awful winter.

Despite the presence of a lot of blue and yellow, including on Toronto's CN Tower and my current fingernail polish, not much will change about the lives with people living with Down syndrome today.  There will be pride, yes... there should always be that.  However, there will still be discrimination at the doctors office, by law enforcement, by teachers, counselors and therapists.  Much of it will be hidden under the guise of "meaning well" or paternalism, doing "what's best" for the person instead of considering individual needs, but it will still be there.  It may be based on old eugenics theories too, a sense of doing what's best for a skewed perception of "the greater good".  There is internalized ableism too within the community, and a lot of elitism even in the disability world towards those with intellectual disabilities.  There will still be a public perception of "lesser" and "sick" as our very language outlines how we really feel. 

As a society, we give a break to parents that murder/attempt to murder their children if they have a disability.  We wreathe these acts in compassion, that somehow the death of a child, of any person at the hands of another is okay if they have needs outside what is considered an able norm.  Instead of increasing community supports and education, we choose instead to buy into the tragedy rhetoric.   This year started out with another death of a person with Down syndrome, this time a 17 month old boy named Lucas Ruiz, who was poisoned not once, but twice by his parents in what they are calling a "mercy killing".  Both parents believed that their child who was born with an extra chromosome, a heart issue and required a feeding tube was "better off dead".   There are still many people who believe that he and people like my son should never have come into being at all, that Down syndrome is a burden to society.

After all the socks and banners and ribbons and awareness, and memoirs and conversations and "teaching moments", why are we still having these discussions?  Why are these things still happening?

What people with Down syndrome need is meaningful inclusion.  Is acceptance.  Equality.  PRIDE. A sense of community and of belonging.  Not socks.  Not pats on the head.  Not superpowers or heavenly qualities.  People with Down syndrome want a fair shot at having a happy life.

You know, the same stuff the rest of us want.  The same things I want for all three of my children, not just the "able" ones.

The same things we all keep writing about, over and over again.

Maybe this year we'll get lucky and someone will take the hint.

Happy World Down Syndrome Day.

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