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

Add your Advocacy post now!

A Step Backwards for Down syndrome Advocacy

I've been out of the loop for a bit.  As most of you know, recently my son had open heart surgery to repair his AVSD.  I haven't been around in the online scene as of late which has been troubling me.

What's troubled me more is a current shift in thinking, especially when it comes to the events following the death of Ethan Saylor.  I was saddened to come back from my hospital hiatus to see that not only some advocates, but even some of the major organizations are pushing towards "Down syndrome specific training" for police and first responders.

I'm not going to beat around the bush: I think this is really a misguided application of energy.  One in fact, that may undo years of hard won advances with Down syndrome advocacy.  There are a few reasons for this, some of which I'm sure haven't been considered by those who are pushing for it.

Firstly, who decides what subjects are taught or what aspects of Down syndrome will be highlighted in this training?  What does this proposed training involve?  Not too long ago, the community was rocked by a supposed "nursing" site posting an old image caricature of an infant with Down syndrome.  Many of the "conditions" presented were irrelevant, occur in the greater population at random and have no bearing on quality of life.  What will affect a person with DS life are things like heart disease, which the general population also has and in much greater numbers.  There are umpteen studies showing that positional asphyxiation is a reality.  Law enforcement and any person using restraint (including us psych folk) are well aware of this.  Every single document, every single video that I have come across in my search clearly outlines the danger of positional asphyxiation.  A person with DS is in danger of dying when restrained face down on the ground, yes.  So is everyone else.  Except in Maryland, apparently.  The reality is, these deputies knew the dangers and chose to ignore them, or quite frankly, simply didn't care.

Secondly, who is qualified to teach 'Down syndrome specific training'?  Physicians?  Lawyers?  Other law enforcement?  The National "Advocacy" Organizations?  Training also needs constant updating and re-certification.  Who designs these courses, who are the supposed experts here?   Who accredits them?  From what sources does their information come from?  If you remove the money from the equation (as people will have to be paid to come up with this course material, train the target audience, maintain the certification and audit those with the training), who really benefits from this training?  The officers, who will look at it as one more thing to endure to get their superiors off their case for one more year?  With that in mind, will these strategies really get incorporated into everyday use?

Thirdly, and most importantly is the glaringly obvious thing that people are missing:

By advocating for Down syndrome specific training, you are further marginalizing those with DS as the "other", as "different" and setting them outside the rest of society.

By stating that people with DS--a population that is as diverse as the greater population it is derived from in the first place--need "special considerations" when being talked to by a police officer, EMS, Firefighter or whoever else you want to extend such "training" to, you are predetermining.  You are profiling, you are prejudging.  People do not fit into neat little boxes.  For example, you cannot deal with every mentally ill person that you encounter identically as there is a pantheon of symptoms and an equal amount of ways that communication can break down. The differences are just as numerous and the analogy holds when you are looking at people with developmental delays.  Every single person is different;  in terms of DS, the extra chromosome can express itself in a multitude of ways.  Some will have sensory issues, most won't.  Most will have heart issues, some won't.  Making blanket statements about anyone, be they developmentally delayed, mentally ill, of a specific ethnicity, or any other difference that sets "them" apart from "us", is dangerous, marginalizing and opens the door for so much abuse. Relying on gross generalizations in times of crisis is poor preparation and serves and protects no one.

I have a great respect for all law enforcement, not just the officers that I cross paths with in my line of work.  I refuse to see police as mindless killing machines who need to be distinctly told not to do something so that all of us can stay safe. The ones in my community certainly aren't, at least not any more.  Back in the bad old days... well, I could tell you stories growing up in this region.  There is a certain level of education that is required to get in now.  There is a certain level of community involvement that is required, you have to be a very well rounded person to be considered, to represent a diverse population safely and with compassion.  That isn't something that is taught or possibly can be taught, it is recruited for.

We need real world solutions, not special training, to keep people like my son from dying at the hands of those who are sworn to serve and protect him and the rest of my family.

With that in mind, allow me to humbly offer the following:

1)  Recognize that a Sheriff is an elected official not simply the "top cop", who can quite easily become as corrupted as any other elected official.  Know your candidates and find out their track record prior to them obtaining office.  Cast your votes accordingly.

2)  Abolish "moonlighting".  The deputies who were responsible for the death of Ethan Saylor were moonlighting as mall security, a job that (if our friends in mall security will forgive me) is well below their level of training.

Let me give you an example.  As an RN, I am not allowed to work as a Personal Support Worker if I find myself strapped for cash.  There is a reason for that:  I have a certain skill set, a scope of practice and a specific license.  If I were able to take a job below that scope of practice, yet in the same field, it would blur a lot of lines.  If I was tending to an elderly client who suddenly developed symptoms that I recognized because I was an RN, I couldn't pretend it wasn't happening because "a PSW wouldn't know that".  By the same token, if I used interventions that I know from being an RN, I would not be able to legally justify/use them due to my current employment as a PSW.  The lines are too blurry, the jurisdictions too different.  I can't be one thing and pretend not to be a couple days a week to work a job with a lower skill set, if only to protect my license and my main livelihood.  You shouldn't have active paramilitary personnel working as mall security either.  When the three men were called to the scene, they were acting as mall security.  Somewhere in there, they decided they were deputies again.  Regardless, they sure became deputies again (and invoked all rights and privileges as such) once Ethan was dead.

If I need a little extra cash, I pick up overtime.  The police in my area work along the same lines.  There are also a lot of paid duty opportunities for police as well.  This is why here, you find uniformed officers at ball games, outside construction sites, doing patient watches in hospitals and at the liquor store at Christmas.  During such, they are expected to fulfill the responsibilities that their uniform dictates.  If malls and whatnot expect a certain level of security, they pay for it.  Offer the police a little respect and pay them properly to perform their duties as police officers.  They earned it. Allowing active, trained officers to take lesser skilled jobs in a related field is simply asking for trouble and opens the door for tragedy, as it did in Maryland.

3)  Recognize that compassion cannot be taught or encouraged in those that aren't receptive.  Recruit accordingly.  There are some that go into policing that are angry, have deep set prejudices and too easily cross the line.  We all know stories of this, of cops that take it too far.  Take this guy or this guy, or this guy.  But, for every horror story, I'm betting there are 10 great officers (both men and women) who actually do care about the community they serve.  You need more of them in the field, not just in front of the camera when the politicians feel it's appropriate.  It is possible to have a general sensitivity towards various cultures and groups and still be able to control a situation (and ultimately ones self).  It's been put forth by one blogger that we live an ugly world and if there was more compassion we would not need police or even soldiers as there would be no war.  I'm not talking about achieving Utopia here; sometimes force is a necessary evil.  However, I guess I'm a bit spoiled coming from Canada.  We don't have legions and legions of soldiers.  The ones we do have are respected across the globe for their compassion and known as "The World's Peacekeepers".  It is possible to be both.  The police in my community at least, certainly reflect this.

The idea of "Down syndrome specific training" is ridiculous, insulting and might very well put our advocacy efforts back decades.  You cannot train for such a diverse population, as people with Down syndrome exist in every ethnic, socioeconomic and religious background, not just white, middle class, Christian ones.   Those are the factors that dictate how a person with Down syndrome receives care, is viewed in the community, is treated in their own family and even how the person themselves view law enforcement and first responders.  It is these factors that will shape how a person with Down syndrome will react in a a given situation, not their chromosomes. The idea that my son, who will grow up respecting law enforcement--just like Ethan did--could die of  "Down syndrome" and "heart issues" at the hands of law enforcement--just like Ethan did--shakes me to the core. There are a lot of comparisons that I cannot help to make between Ethan and Wyatt; Ethan's Mom is a well known DS advocate too.  The idea that sweeping generalizations, by the medical community and by law enforcement, may very well rule my son's future life and death, makes me angry.  We cannot hope to change the public perception of people with DS to one of complete inclusion by making people with DS the "other" to the very people that are supposed to take care of them.  There is no magic list of "things that you need to know when 'dealing' with a developmentally delayed person" other than you are talking to a human being with thoughts, feelings, desires and needs.

Just like everyone else.  I cannot stress that enough it seems; that particular point cannot be lost.

Surgical Suite: Coda

Hectic days followed our return from the hospital.

We were glad to have our boy home... I was glad to be home.  There is nothing like sleeping in your own bed, a sentiment that Wyatt himself would have agreed with.  There seemed to be piles of things everywhere and a mountain of laundry to do, but we were home.  Everything else was just details.

The first night I tiptoed into the twins room on a couple of occasions, just to ease any motherly paranoia concern I might have.  At one point I paused in front of Wyatt's crib, concerned about his breathing.  It was even... yet seemed shallow.  Slow.  The panic started to rise up for just a second until I caught Zoe's breathing out of the corner of my eye.  They were the same.  Slow, even and very much asleep.  There wasn't a problem with Wyatt's breathing, in fact it was perfect.  What had startled me was the lack of secondary noises, the gasping.  With a smile I returned to bed, with the monitor cranked up a little higher. 

Over the next few days, Wyatt seemed to become more energetic before our eyes.  By Wednesday, he was sitting in his booster chair waiting for his breakfast and he babbled at me non stop for what seemed like 3 minutes.  Our "conversation" went back and forth for quite some time until I realized that I was going to need more coffee to keep up with this child.  His eyes, which often assumed a "Dude abides" half mast laid back look, were wide awake and shiny as green river stones.  He was all over the place at playtime, energetically chasing his sister down and interacting more enthusiastically with the world around him.  He didn't seem to mind the solo "not so" baths either... due to his incisions, we had to bathe him by himself in an inch of water.  He carried on as if this was a regular turn of events and made up for the lack of depth by splashing even more, grinning from ear to ear.

The week shot by and then it was Thursday, the day of his follow up appointment at Sick Kids.  He was scheduled for a chest Xray at noon, an echocardiogram at 12:30 and his follow up assessment at 1:30.   We left at 10:30 yet still managed to get snarled in traffic and barely make it for 12:00.  Wyatt and I were headed in to Xray to register, while Sean and Zoe went to find parking.  When I entered the front doors, I could feel myself tensing up.  I guess 4 days is not enough time to shake off your hospital stress.  While waiting, I managed to snap this picture of him, rocking out in the stroller.  He was ready to go.

Rock on, son, rock on.

We were called in and I had to get him undressed and strap him into the "plexiglass iron maiden".  It consisted of a wooden base with a bicycle seat which he would straddle.  While holding his arms above his head, two plexiglass halves came together in a tube around his ribs.  I held his hands and started my singsong during this, which seemed to give him something to focus on.  We only needed two views and the tech was quite nice this time (as opposed to our last xray encounter), which made a potentially unbearable situation tolerable.  During the entire process, you could hear Zoe screaming "WYATT!  WHY-ATT!!" from the waiting room and the occasional stampede of little feet down the hall past our door.  I couldn't shake the mental image of our mini-amazon in pigtails storming in, demanding Wyatt's release.  Once we were done, we snuggled afterwards and Wyatt cheered up in time to high five his new friend as we walked out the door. 

This is pretty much where our day stalled.  We were right in the middle of what would be our normal nap time and the echo people were really backed up.  What started out as 10 to 20 minutes quickly turned into an hour and 15 minutes of trying to keep twin two year olds occupied.  Upon entering the echo room, I laid Wyatt down on the stretcher, held his hands and sang to him once more while he cried large tears at the tech.  Eventually he fell asleep... which gave her more leeway to get some better pictures.  Once he was completely asleep, I extracted myself by letting him hold on to some of the lead wires and was able to straighten out and un-contort myself.  He woke up as she put the wand to his neck and he would have none of it.  We concluded the echo, I cleaned him up and tried to console him as we waited in the hot little room for the official okay to move on to the next appointment.  It was now 2:30.  We were an hour late for our clinic appointment; so much so that the NP came looking for us.  She gave a quick listen to his chest while I gave him some juice and settled him down.  A few minutes later the tech returned and we were released to go to the NP clinic.

Wyatt was undressed again, weighed and auscultated.  Since the echo was so detailed (!), there wasn't much left to do but take out his stitches and do a little health teaching.  The results were similar to those post surgery:  you could see the AVSD repair and there was some mild regurgitation of the mitral valve and up into the pulmonary veins.  He would probably have to have this valve "tuned up" in the future, but right now, things were greatly improved.  Although we were still to avoid picking him up under his arms and avoid activities that involved a lot of reaching for the next six weeks, he could return to his early childhood interventions as soon as possible.  With that, we attended to the last bit of nastiness:  taking out the two "purse" stitches that had held his drain sites closed.  That completed, he was a free man.

My parting ritual was a little rushed on the way by as we had to rescue the van from the parking lot, but the fountain received its shiny offering, hopefully for the last time. We will have to follow up with Wyatt's cardiologist at regular intervals; our next appointment is in two weeks.

The last movement has completed, the arias have been sung.  The hero has finished his journey and moved to a better state of existence, surrounded by his loving family.  I guess it says a lot to have framed his AVSD surgery in the context of a symphony or an opera, but we all cope how we can.  I use music and a sense of humour that is often so dark, I can barely see.  Not to put a too fine a point on things but since I have been home I have been finding unopened cans of Coke all over the house in various states of refrigeration.  I could lament the fact that I have taken a can out of the fridge to drink and abandoned it with one distraction or another... or I can look at it as getting my future self a drink (how thoughtful of me!).  Music is a ribbon that weaves through most of my writing, collecting thoughts as one would collect beads;  it is no accident that his surgery, this major life event, ended up being presented in such a way.

As promised, we need a fermata, a final note to to hold on high and finish this opus.  We got that, with the help of the weather.  Aside from our brief glimpse of sunshine on the day Wyatt came home, things had returned to rain and gloom.  As we left Sick Kids yesterday, a warm wind was blowing.  The sun was shining, it was 20 °C (68 °F), there were tulips poking up in the gardens and the landscapers were limbing the trees and filling the pots with spring blooms.  As we paused for a moment to allow a car to pass before the stroller, Wyatt craned his neck around to look at me.  A gust of wind tousled his curls and he smiled broadly.  His hand reached out to mine and with his eyes still shining, he put my hand to his cheek and nuzzled it a bit before facing forward again. Almost on cue, his sister shrieked "WHY-ATT!  Yay!" and with an equally shrill "WHEEEEEEE!" that seemed to hang in the air forever, she led the charge away from the hospital.

Onwards.  To new adventures.

The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Surgical Suite: Finale

I woke up at 0300 again, this time to a nurse tiptoeing in to let me know that it was time for Wyatt to have more Tylenol.  He was fast asleep and comfortable, his breathing easy.  It was decided to leave him for now;  she left the dose in case he woke up and I went back to sleep.  I was awake at 0800 again to find him still comfortably asleep, despite now having missed two doses of Tylenol.  This was fabulous;  his pain was obviously controlled, he was eating and drinking, all his tubes were out and all that stood between us and home in a few hours was whether or not he could poop.

By nine we had to wake him up to do vital signs, give him his morning Lasix and get breakfast into him.  I went to wake him... he stretched catlike and opened his eyes with a smile, which rapidly turned into a frown once he saw the syringe.  We tussled briefly over meds, we hugged and went about the business of getting him sorted out for morning.  I opened the blinds at one point and instead of being greeting with the usual rain and gloom, I was almost startled by sunshine and fluffy white clouds.  It was a beautiful morning, made even more so by the promise of home. 

The NP came by, had a good listen and gave a little health teaching re: his rashes and dressings.  His drain dressing was to come off the next day and as far as she was concerned, she was going to recommend him for discharge.  I ordered his breakfast and when that arrived, started the process of getting it into him as rounds were going to be in a short while. 

It seemed silly to get him dressed again before giving him breakfast, so he ate it shirtless (and pantless, but you know our feelings on pants).  He didn't care;  he was hungry!

I can has pancakes?

You can clearly see from the photo that the incision is looking good.  Also present are the bandages over his drain sites.  To the right of the incision is one of the holes left from the pacing wires.  The redness on his neck is excoriation from the dressing over the central line.

After a pancake and some oatmeal (which, in our house, cures everything) and one of his cups full of juice, he was ready for a cleanup and to get dressed.  Before breakfast, his nurse had given us a small vial of powder to mix in his juice if he didn't have a bowel movement.  I smiled at her and told her I'd mix it up, but I'd first give him a chance as he normally went after breakfast.  She looked at me oddly and moved on.  Sure enough, a few minutes after breakfast, Sha-ZAM! I don't think I've ever been that happy to change a diaper.

I had him washed, dressed in a plaid shirt and soft cargo pants and socks (which, he immediately whipped off), myself cleaned up and the room straightened before rounds appeared.  During the initial presentation to the group by the NP I realized something.  Until she mentioned it as an afterthought, I hadn't heard the words "Down syndrome" or "Trisomy 21" in reference to Wyatt since the anesthesiologist mentioned it just before his surgery (as an aside).  It was the same in rounds, at report and at shift change.  Even in places where you would expect it to be mentioned, it wasn't.  I can't tell you how comforting that was for me.  He was just a boy in their eyes. A boy who needed his heart fixed, who had it fixed and was now avidly chewing on one of his socks.  He was not defined by this extra chromosome; his worth, his eligibility for treatment, his person-ness had nothing to do with that.  The tears threatened to well up again, as I was eternally grateful for this subtle yet important change.
  
The NP popped back in as the others moved on down the hall to let me know that she was going to work on his discharge orders.  I should tell my husband to pick us up between 12 and 1230.  As it was 1030 now, we had some time to wait, so Wyatt and I alternated between playing and watching TV.  We received our final orders, a prescription for Lasix (which he would take once a day for a week), hydrocortosone for his rashes and Tylenol for pain relief.   We waited for Sean to arrive;  he would be at least 45 minutes late due to an accident on the Gardiner Expressway, but that didn't matter as I wheeled the first load of luggage out through the unit doors into the hall and hugged the stuffing out of my family when they did arrive.  Quinn was playing it pretty cool, but Zoe's hysterical "Mama! MamamamaMAH MAH!" echoed throughout the Atrium. 

Our luggage retrieved, "Why-ATT!!!" received happily by his siblings, we made our way downstairs.  On one of our first visits there, what seems so very long ago now, I tossed a penny in the fountain with a wish.  I have kept up that tradition;  every night before I went to the hotel or on my last visit downstairs, I would stand in exactly the same spot, bring a Loonie to my lips and then let it sail into the fountain after asking whoever was listening for a little extension on our luck.  Before we left en masse, I stopped our family in the Atrium and quickly dug out a Toonie.  It touched every single one of our lips before it too landed in the water, after I thanked the powers at be for listening to this mother.  This obstacle, this issue had been overcome. That little undermining ditty had finally been silenced after all these years.  Despite the giant backpack I was wielding, I felt lighter.  Wyatt could not stop smiling and Zoe would not stop babbling about him. Our prescription collected (along with a coffee for me), we walked out into the afternoon and into the rest of our lives.

The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda