Friday, May 10, 2013

Motherhood: Now and Zen

Sunday is Mother's Day.  I really wanted to write a funny post for a change...  one that was full of the madcap antics of my household.  Possibly even some highfalutin' adventure.  Hey, it could happen.  However, most of what happens in my house lately has fallen into the "you hadda be here" or "TMI" categories.  You don't need to know the intricate details of how I can't use the washroom or have a bath or shower in peace, between the hours of 8am and 10pm (give or take an hour on either side).  You don't need to know what happens when a toddler on Lasix, a full cup of juice, two oatmeal cookies and an undersize diaper collide.

You don't.
You're welcome.

The reality is, I'm really not feeling very funny these days.  Oh sure, we're still laughing, we don't live in a tomb for heaven's sake.  However, I'm not feeling uber witty, all light and bouncy and full of one liners.  That probably has a lot to do with Wyatt's recent open heart surgery.  He's fine, great even.  He's done remarkably well and will be the subject of many an update.  However, I have to recognize that as a Mother, seeing your child go through that is stressful.  So stressful I think, that I can honestly say that Wyatt's surgery date was probably the worst day of my life.  I often describe my kids to my childless friends as the walking manifestations of my own heart.  That they are too, no matter how mad I get at them for breaking my stuff.  To then hand over one of them, to have his own heart cut open and fixed, sewn back up and then handed back... it's the kind of stuff that affects one deeply, totally because of my Momness.  My nurseness is all "keep the incision clean and monitor for CHF", but my Mommyness... she's having a bit of a hard go.  Despite what I think, despite what my hardass side thinks, it's going to take a while to get over that.

What I am doing between random bouts of productivity is a lot of reflection.  My story, as a mother, is just one amongst a billion.  I've thought about that.  I've thought about a lot of other mothers lately that have also touched my life.  My own, obviously, whom I won't talk about as she is now reading this (Hi Mom!) and many, many others that I have met along the way that have gently shaped my reality.

In my early days of nurse-ness, in my first psych job in fact, I met a mother who will stay with me always.  I was so new in fact, that I was in the (now enviable) position of being too inexperienced to completely comprehend the potential dangers of my job (yet still managing to scrape by somehow).  Later on I would live in fear for a while, as the knowledge of what could happen became very real.  As time went on, as experienced has been gained, I am no longer in fear.  However, this lady was pretty much one of my first "first break" parents to have a Health Teaching conversation with.  I've had that conversation seventy bazillion times since then, with varying results and varying levels of comprehension and acceptance.  This evening however, she was listening to every word that I spoke to her, yet still possessing a gaze that was miles away.

It was Sunday evening and we stood at the front desk. She had brought her son back after a weekend pass at their island cottage "where it was safe and he could just run around and scream at trees, y'know?".  He was resistive to medication, had refused to take anything other than his sleeping pills all weekend and was so paranoid and delusional that we had become part of the scenario he had built in his head.  This son had gone from being a kid with okay grades, played sports and had a pretty little girlfriend who adored him.  Now he was demanding that we take the microchips out of his head, that we were the FBI, the gestapo.  His parents had hoped that a weekend in a more familiar setting would help "settle him down". She was pretty put together, this Mom.  Edgy haircut, smart looking glasses, expensive clothes.  She was an educated, successful woman who joked occasionally as she spoke. She was accepting of his illness, yet her eyes spoke of her sadness that this new development had brought on.

A terrified howl and the sound of furniture going over got my feet moving and I ran down the hall, my Doc Martens digging into the carpet. I unconsciously checked for the restraint keys in my lab coat pocket before stepping forward through the crowd of white coats around his bed.  I talked him out of his corner, encouraged him to take some medication and stayed with him alone until he had calmed down a bit and promised me that he would try and go to sleep.  I caught sight of his mom in the hall as I was picking up the pieces of a broken overbed table.  She was out in the hall, half pacing, half lingering to talk to me.  Dragging the table with me, she told me of her son, the one she knew, not the sick version that was currently mumbling to himself as the medications started to work.  She felt robbed, she said, that this illness had seeped in little by little, hardly noticed until it was raging in front of her.  She despaired that her son would never come back to her.  I comforted her as much as I could, gave her as much information as I could, but it was obviously not enough.  As we parted company that night and I dragged the broken table to the back hallway I knew then that schizophrenia was, as a parent, one of the hardest things to see happen to your child. At the time I was separated from my husband and convinced that children were not for me.  I remember thinking that this experience only strengthened my resolve.  This would be too much to bear.  I ran my french manicured nails through my blonde-on-blonde locks and contemplated the lack of guarantees in life as I sat down to chart.

Since that time, her face, her words come to mind as I talk to parents.  I often wonder what happened to that young man and his family.  I saw him through the crisis, helped the family as much as I could until he was discharged home.  So much has changed since that time however; even the person I was then no longer exists.  That much younger person was all about having a good time and going to the gym and spending an hour a day on her hair.  Now I'm lucky if I get to run a towel through it before grabbing a scrunchie and makeup is only attempted if time, circumstances and weather permit.  Many years later I wish I could reach back through time and speak to this Mom again and talk to her, mother to mother.  I would not be able to take her pain away, but I would know how to ease it sooner.

I saw that mother again the other day.  Not really, but as I was absentmindedly poking at the monster zit erupting on my chin I caught a glimpse of her in the mirror.  Something around the eyes, the way my mouth was set.  A weariness.  The look of a mother whose resolve has been tested, whose child's life has been endangered, even if only in her mind.  She has been through an ordeal, this mother.  Unlike those years ago, I know what to say to this woman.  I know to show her the future, to look beyond her body's natural reaction to rest, to regroup, to minimize.  To be kind to herself and not take too much on.  I know what to say now.  My only hope is that I listen.

Instead of spending Mother's Day in bed, being surrounded by my family and having breakfast made for me, I will spend it with a group of other mothers.  There will be no brunch, flowers or handmade cards.  There will be more terrified young men however, along with very sad mothers (and fathers). I will be working this Mother's Day, as many of us Nurses do.  If we decide to do a pot luck (or order in as we tend to do on special days), we will combat the sadness by making a sheet a table cloth and eating our delicacies in shifts.  It always amazes me, how we create civility out of sterility and chaos.  But we do.  We will talk about our families and share war stories about other families, other mothers.  In this surreal universe that is my life, this makes total sense to me, to explore the facets of "Mother" on Mother's Day, surrounded by mothers, in a break room located in the heart of psychiatry of a large regional hospital. 

Mother.  We all came into this job woefully unprepared and all of us face the unknown with our children.  It is a job that is completely thankless at times.  It is a job that comes with infinite happiness.  It is a job that can vacillate between the two, mid-sentence.  Special needs or not, this job is hard, the hardest thing I have ever done.  We wake every morning with a list formulating in our head and retire at night wishing we had gotten more done.  It's never as we imagined it.  As my daughter walks over with a huge grin, sneezes in my coffee and tries to feed me the plastic container of a Kinder Egg out of a toy basket, I reflect on that:  it's never as we imagined it.  Thank goodness too, as I never would have imagined how hearing Wyatt laugh without running out of breath would sound, how my chest contracts and my own heart hurts when I see it happening.  How an hour long lecture on long division and the digestive system would be music to my ears as I prop my head up and poke absentmindedly at my dinner after a long day at the office.  How real and surreal and magical and factual and sad and joyful it can all be.  There are still no guarantees, my then-me still got that right.  My now-me knows that Motherhood is a journey, one that mainly resides in the intangible.

Happy Mother's Day to all mothers everywhere.  May your day be reasonably restful and stain-resistant. 

Wednesday, May 1, 2013

In the News - April 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and awareness. April was a busy month, including the ongoing efforts of the Down syndrome community to demand justice for Robert Ethan Saylor and to illuminate an ongoing bias towards those with Trisomy 21. 


Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

BLOG
The weirdness of being told that the death alternative is the one I should consider.

Read more here: http://www.islandpacket.com/2012/12/01/2295922/beaufort-teen-with-down-syndrome.html#storylink=cpy
BLOG
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Attitudes about Disability Prove Almost Lethal
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
BLOG
BLOG
VIDEO
BLOG
Cutting Our Teeth on a Paradigm Shift –
BLOG
Antidote
BLOG
Questionable Parenting (this post is funny) –
BLOG
Ask the FBI What is Going on in the Frederick County Sheriff (Day 2 of “8 Days for Ethan”)
BLOG
Public Awareness and a Redress of Grievances (Day 3 of “8 Days for Ethan”)
VIDEO
APPEAL
BLOG
EVENT
Annual Inclusion Awards


BLOG
BLOG
Let’s get some National Advocacy (Day 5 of “8 Days for Ethan”).

BLOG
BLOG
BLOG
Who will speak for Ethan Saylor?
EVENT
LINKS
Sunday Blogaround - 4.7.13
BLOG
LINKS
42 Great Down Syndrome Resources You Should Know About
BLOG
Mom, I Hate Having Down syndrome
BLOG
BLOG
BLOG
BLOG
BLOG



VIDEO
EVENT
BLOG
A Game-Changing Treatment for ADHD
I Married a Pygmy –
A Game-Changing Treatment for ADHD
BLOG
LINKS


BLOG
BLOG


BLOG

BLOG
BLOG
The special education that we really need…
BLOG
LINKS
BLOG
LINKS
DS Research 101: Part 2
BLOG

BLOG
BLOG
VIDEO
VIDEO


BLOG
BLOG
BLOG

APPEAL

EVENT
BLOG

BLOG
BLOG



VIDEO


BLOG

VIDEO

VIDEO
VIDEO

BLOG



This month:






Fairytales, a post from September 2012, tied for a "SWAN" for "Best International Post." 

This month also saw the creation of the Surgical Suite:


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

Monday, April 29, 2013

The New Face of Advocacy

I am an advocate.

I know, I know... I've only been doing this for a little over two years, a fact that gets pointed out to me a surprising amount, actually.  However, the thing with civil rights is this:  it doesn't matter how long or how hard you've been advocating, but that you've been doing it.  Period. There is always a person or organization that feels that one group is less than another;  that is certainly the case when you look at Down syndrome.

When I was a kid in the '70s (back even before "Awareness" was de rigueur), if you were raising funds, you went door to door.  You talked, face to face to the people in your community, you handed over petitions for your neighbours to sign.  We had to do that once, not for DS (as those children were hidden away then), but for safety. The house I grew up in is located at the top of a hill on a sharp 90 degree turn.  Drivers would gun the motor at the bottom and would be going full tilt by the time they reached the crest and then they'd hit the turn.  Not surprisingly, as this was in the days before MADD, many people--especially in the winter--would not account for the turn and end up on our front lawn.  During one afternoon storm, my brother and I amused ourselves by counting the cars as they came crashing over the curb.  There were 19.  Every spring our front lawn was a disaster.  We would collect the hubcaps and line them up for their owners to retrieve them.  What we should have done is nailed them to the fence as a warning, but hindsight is what it is.

My parents took up a neighborhood petition and took the problem in front of the city (then "town") council and got a stop sign put up halfway up the hill.  That slowed the drivers down for the most part and we could stop fearing the day that we'd end up with a Buick in our living room.  Today it seems very simple, it is an issue of child safety.  Then, well, it was a big deal then.  No one cared about the two kids living in our house (or the two adults either).  Or the other children that came over to play.  In fact, there was some push back, as there always is in matters of bureaucracy;  I can't quite remember what it was exactly, but one of the Town Councillors felt that traffic control was pointless and the funds for one stop sign would be better spent in Bramalea (a then-growing part of Brampton that he represented).  Various arguments were presented, I think just for the sake of creating discussion and justifying salaries.  One Regional Councillor argued that it would cost the taxpayers too much in gas to stop and start again.  Driver education was also mentioned at various points.  But, we stood our ground.  Sure, people looked at us a little weird and grumbled as they stopped at the new stop sign.   But, we did it and it happened.  No cars ended up in our living room, our lawn remained green and my brother and I managed to grow up and make it to adulthood.

Petitions, leaflets, posters, marches, protests, picketers.  Those was the vehicles of advocacy that I knew growing up.  All very structured and organized and a lot of legwork.  Growing up in a trade union family meant I was exposed to that at a tender age as well.  I'm also old enough to remember the last dying days of the Vietnam War on the news.  I was in university during the Gulf War (Iraq the first) and there were protests everywhere.   There were bomb threats called in to the university daily.  This was also in the early days of GLAAD, of the inclusion movement.  Macedonian students clashed with Greek students.  It wasn't a pretty time then either.

So, it's not that surprising, that me, a union nurse who has now moved to another area of suburbia (not Bramalea) in this now cosmopolitan city, is advocating for something she believes in passionately.  My youngest son, one of my twins, has Down syndrome.  To myself and Team Logan, it's not that big of a deal.  However, it is to a lot of people.  There are still a lot of people who see my son as not quite a person.  As a freak, devoid of consciousness and meaningful thought, who looks exactly like every other one of his kind.  As someone who has no right to be here (and no rights while he is here).  As a result, he and those with Down syndrome are marginalized, not only by the general public, but by those that make our laws, those that uphold the law and those that are charged with his physical and mental welfare.  Hell, even by some in the greater Down syndrome "community".  It's not just his civil rights that I have to strive to protect, but his human rights.

Once I decided to throw my hat into the ring, I looked around at what was to be done.  There are a lot of Awareness Campaigns and awareness is a good thing.  However, I quickly grew tired of awareness, especially when you had people wearing the T-shirts or the bracelets and calling their friends [the R word], or organizations that claim to advocate, yet really don't do much of anything other than raise funds to pay for the next fundraiser.  It was very frustrating, finding myself in a sea of awareness, yet constantly having to explain my son, his medical history, what that means, what that means to us to every Tom, Dick and Harry in the Doctors office, in the grocery store and everywhere else.  I did this for the greater good, in the name of Awareness and Education.  It was bad enough being (practically) asked for my gynecological history by perfect strangers (in regards to the twins)... but throw in a little chromosomal fun (other than my olive complexion and my husband's gingerness) and all semblance of social limits are thrown right out the bloody window.  Different.  Other.  Unworthy.

I turned to the new frontier of advocacy and activism, the internet.  In this, the information age, we all have blogs and Facebook and Twitter.  Through social networking, thousands of parents like myself have come together at various nexus points to talk about our kids and what the future holds.  Thousands of self-advocates, adults with DS, are doing the same, networking and shaping the world around them.  In fact, I had never heard of twins like mine until I found a whole online group of parents of multiples with DS.  Instead of a handful of parents in a local community meeting for coffee once a month, thousands upon thousands of parents, advocates and self-advocates have the potential to meet daily.  In an instant.

It is all very exciting and terrifying at the same time. 

This brand of grassroots advocacy is something that I can do a great deal of, a little at a time.  I don't have large blocks of free time with the demands of my family and my shift work job, so I can do a little here and there, any hour of the day or night.  Which is awesome, as I get to talk to so many people in so many different time zones.  Social media has made our world smaller;  advocacy has now gone from local to global.  I can spend a few minutes when I can, to share my thoughts and experiences or bolster the spirits of another who is having a hard time.  I have been able to help edit publications for Down Syndrome Uprising on the bus in the morning.  I've advocated on break at work, setting up my laptop and writing when I can.  Instead of reading the paper in the morning (does anyone actually do that any more?),  I check the news online.  I check Twitter, I check my Facebook account, group and pages (both Down Syndrome Uprising and Down Wit Dat).  I have blogged and shared news articles while tandem breastfeeding two babies. I have fielded emails with journalists while at pre-op appointments for my son's heart surgery.  I have reached out to countless others from my son's hospital bedside, speaking out against injustice while the morphine dripped in his veins.  Even something as monumental as Wyatt's surgery has not stopped me.  This life event, this period of my life that was so stressful as a parent, is peanuts compared to the struggles of others.  The entire time, I continued to work, cognizant of the fact that not so long ago, Wyatt would not have qualified for this surgery as he had DS; he would not have warranted the medical care that another child would receive without question.  Advocacy changed that.

Anyone can do this as well.  No longer is advocacy solely in the hands of those that get paid to do it or a select few that have the "right look" or the "right feel".  We fight for acceptance of our children, stopping for nothing other than total inclusion.  We have our detractors too... we get called "Mommy Bloggers" and because we choose to use a medium that teenagers also use, because we are not paid by larger organizations or mainstream media, we are easily dismissed with one jaded wave. 

But, as those groups are figuring out, we are anything but easy to dismiss.

Social media has allowed me to connect with family and connect with friends, new and old all over the world.  I'm no longer alone.  I'm no longer the one in a million who has fraternal twins, one of which has DS.  I'm no longer one in 700 mothers.  I am amongst thousands.  Advocacy is no longer a "March on Washington" or on Capitol hill in Ottawa.  We are marching, daily, as we wait for the coffee to brew or the dryer to finish or yes, even in the stolen time in the bathroom.  We do this daily, within seconds.  The face of Down syndrome advocacy, much like the community itself, is growing, evolving. No longer are we trying to change our little corner of our community, to "fix" our children or hammer a square peg into a round hole.  We are trying to change the world.

One tweet, one post, one comment, one update, one petition, one share, one vote at a time.


This post is part of a Blog Symposium brought to you by:

Down Syndrome Uprising
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