Monday, December 31, 2012

In the News - December 2012

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 of love.  These are from the month of December.

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

Beaufort teen with Down syndrome is transcribing her way through the Bible

Read more here:


EVENT International Day of Persons with Disabilities, 3 December 2012

Interview: Dr. Brian Skotko (part 1)

The Arc Reacts to the U.S. Senate’s Defeat of the Convention on the Rights of Persons with Disabilities

Creating awareness around Down Syndrome

We’re Not Special Parents

Erma Bombeck: Special Mothers

EXCLUSIVE: Compulsory abortion for Down’s syndrome foetuses, says UKIP Kent candidate

My Son Has Autism. Please Don’t Be Afraid.
Commercial Features Down syndrome Child

Charity52 Releases Limited Edition “Achieve” T-Shirt with Down Syndrome Association of Central Texas

Is this the last U.S family to adopt a baby from Russia? Utah couple welcome Down syndrome girl just days before Putin bans American 'baby trade' forever

Homecoming couple continue to inspire

We had our tenth and sadly final, T-21 Blog Hop on December 21.  I'd like to thank all those that have participated this month and in months gone past.  Perhaps we will revisit this feature sometime in the future. 

Our Facebook page is well on it's way to reach over 1000 fans! Welcome to all our new friends. Please share!

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

I'm looking forward to judging December's Photo Theme "Holidays Around the World".  Results to be posted later on Down Wit Dat's Facebook page. January's Theme to be announced at the same time. 

...And that's the news.  Keep the stories and information coming!  See you in 2013!

Sunday, December 30, 2012

Silent Sunday - Winter Wonderland

I'm not sure if I like this... OOH!  IT'S EVERYWHERE!
Even over there! That smile disappeared a few seconds later when his hand hit the snow.

Snowy twins
All three.

Friday, December 21, 2012

Share the Light

If you're reading this, it means the world hasn't ended.

(Not so) Whew.

You wouldn't know that from around here as it seems this house has already been hit by the ten plagues.  I'm hoping that we have seen the end of it as we've pretty much cleaned out all the baby Tylenol in our area.  Twice.

In my last sick post, Boogie Wonderland, I talked about battling the Martian Death cough.  We did eventually get over that and my post-bronchitis cough was receding.  We even got out of the house twice:  the first outing was with ICDSP and the second at a friends house where we met their newest arrival.  We had to leave the last one early as Wyatt spiked a fever and started sporting the green walrus look again.

By the next night, in the middle of my shift, I started to feel crappy again.  It started with a few sneezes and by 0730 I was a sore, choking, feverish mess. I had managed to acquire, after being off antibiotics for only a few days, a nasty sinus, throat and ear infection.  So nasty that even a gram of acetaminophen only took the edge off my fever/pain. The doc prescribed some serious antibiotics this time;  they are of a particularly nasty variety with a list of side effects as long as your arm.  I was also less than enthusiastic [read:  beside myself] when I went back the clinic with the rest of the family the very next day.

Sean and Wyatt went on (different) antibiotics as well; poor Wy got an added insult with a separate eye ointment .  We were a coughing, hacking sputtering lot with this bug, dubbed Boogie Wonderland 2:  Expectorate Boogaloo.  After a week of Tylenol, meds and narcoleptic fits (yes, really), I'm happy to say that we are almost back to health.

Through a series of tragic events that also happened within this time (and shall not be recaptured here), it became apparent to me that despite everything, I have a lot to be grateful for.   Yes, we were all very ill,  Wyatt and I especially.  However, as I initially grumbled to myself while picking up yet another prescription on Friday afternoon, it occurred to me that I should be grateful for many things.  I was thankful that I was in the position to afford my prescriptions and even more so for having a job with benefits that covered all of them completely.  I was grateful that my son did not become more ill, as those with T-21 tend to... I was appreciative of the fact that all my children were very much alive and snuggled in my arms at various points throughout that evening.  The last one especially.

Ahh, the kids... so full of light and magic as of late.  All are quickly developing into the people that they are going to be.  Zoe's speech is improving daily;  she can count to ten and you can understand more and more every day.  Wyatt is working on standing;  my little boy stood with his worker the other day, holding onto the table and otherwise unsupported for quite some time.  He has popped a few more teeth this week which opens up a whole new world of chewing and dietary additions.  My eldest, Quinn, is continuing to demonstrate a dazzling intellect, a pointed wit and a deep appreciation for art, music and the creative process.  And science.  Don't forget that.  He only mentions it eleventy-bazillion times a day.

I had started my Inspiration post before I was sick and it lay untouched and unfinished for days.  I was both physically sick and heartsick.  During that time, it felt like the sun had been taken out of the sky.  That hope had been lost.  Although we were all still throwing apocalypse jokes around, it seemed that it really was the end of civilization as we know it.  In a whirlwind of violence and hatred and spin and pain and anger... there seemed to be only darkness.  And fear.  

There was also my gratitude, lets not forget that.

This time of year has been special since time immemorial.  People have lights their houses, they light a menorah, a tree, candles, even a Yule log.  We do this, fundamentally to banish the dark.  In (one of) my personal traditions, on the solstice we welcome back the sun.  As of today, the days are officially getting longer.  Spring is coming.  Hope is reborn.

With everything seemingly gone to hell in a handbasket, I needed a little of that light early.  I had been inspired by a wonderful group of parents (and their equally wonderful children) the week before.  Armed with this, and knowing that so many were feeling some of the same things I were, I encouraged folks to bring some light, some hope, some good tidings to my Facebook Page.  I started an album for pictures and for lack of a better title called it "Share the Light".  As people shared their interpretation of "light" (a candle, an angel, a sunrise/sunset, an inspirational saying, the smile on a child's face), I shared them back.  A few of my friends picked up on it and started filling their newsfeeds, not with tragedy and spin and speculation and anger, but with light.  And love.  And hope.

I went to bed that night feeling much better.  I know more than few more people felt that way too.

The past (almost) two years have taught me a lot about human nature, especially my own and my place in a vast thundering herd of humanity.  We are all prone to sadness and in these times of uncertainty and loss, well, it's easy to be overcome by darkness when fed only fear and ignorance.

"Share the light" is a pretty good metaphor for a lot of things.  The seeking out and sharing up to date, factual information. The encouragement of ideas and creativity.  The lifting up of anothers spirits, for no other reason than it's the right thing to do.  To be kind.  To provide warmth and shelter and sustenance to those that have not, whether that be physically or spiritually.  I'm not perfect and neither are any of you...  But, there has to be something to all of this if most of the world's major religions are based on it.

I am grateful for what I have.  My job, my family, my friends, my abilities, my me-ness. I am thankful for those in my life, for good or bad, for it is through others that we learn. With this, I think I will be leaving this particular album up and adding to it now and again.  We all need light, especially these days.  Today, since the world didn't end or anything, why don't you share a little?  Do something nice, do something positive.  Give a little of the flame that is you;  you don't know how far it will go or how much warmth it might mean to someone.

Merry Christmas, Happy Hanukkah, Joyous Kwanzaa, Blessed Yule.  Happy Holidays to you and yours.  May your home be filled with love and laughter. 

Share the Light.

My thanks to my good friend S., who shared this poignant quote from Albert Schweitzer with me,
in a moment when I truly needed it.  xox

Join us one last time for the T-21 Blog hop.  Due to lack of interest I will be probably discontinuing this event in the new year.  Let me know your thoughts.

Join Down Wit Dat on the 21st of Every Month!

Tuesday, December 18, 2012


“There are, it seems, two muses: the Muse of Inspiration, who gives us inarticulate visions and desires, and the Muse of Realization, who returns again and again to say "It is yet more difficult than you thought." This is the muse of form. It may be then that form serves us best when it works as an obstruction, to baffle us and deflect our intended course. It may be that when we no longer know what to do, we have come to our real work and when we no longer know which way to go, we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.”― Wendell Berry 

Give and take, ebb and flow... these are principles that I have had to learn to live by.  It's hard to maintain at times, to be the one that forgives when others have slighted, to be the one that overcomes instead of succumbs.  Sometimes you are on the receiving end of things, sometimes you give back.  It's about as fair and balanced as life gets.  There are times when you feel low and then a little spark will reignite your drive.  Inspiration is like this too... sometimes you can breathe life into ideas or others and sometimes others give that precious gift back to you.

I recently found myself in a position of both.  We were invited to and attended a gathering by ICDSP.  The organization had arranged for a two guest speakers, Sukaina and Abbas, a mother and her now adult son with Down syndrome.  Abbas is a graduate of the program that Wyatt is in.  We haven't attended many of these things, simply due to timing and logistics;  carting the twins and Quinn around is not always easily accomplished, especially around dinner time when they are most likely to be cranky.  This day, however, was scheduled for late on a Saturday afternoon. In Loganspeak, this was do-able.  Despite my (now) quasi-substantial online presence, we have not gone to a lot of local functions to network, a point that we need to remedy. 

We ambled in, all five of us, and found ourselves in a room of parents, mostly with infant children with DS.  There weren't any from our former group there yet;  most of the kids were much younger than the twins.  We found a spot where we could put the kids down on the mat and still keep our luggage out of the way.  Zoe naturally started to roam while Wyatt was content to sit and take everything in. I sat crosslegged with Wyatt while Sean ran down the hall after our daughter and Quinn found a quiet corner to draw.  The leaders remembered us and we chatted a bit, catching up on what had transpired since our group sessions had ended.  I was asked about my blog (their blocking software will not allow viewing it at work) and I filled them in on a couple of distinctions that I had won.  I was surprised to hear that they were handing out Down Wit Dat's URL as a resource, a compliment that I found myself almost speechless for.  Perhaps it is the personal connection, I'm not sure, but I was deeply touched by this.

Not long afterwards, I found myself staring into the eyes of a curious little girl.  They were seated not far from us on the mat and her mother had overheard one of the leaders mention my blog.  After eying my twins, the Mom asked about it.  Her eyes lit up when I told her; she said "I thought so!  I read your blog!".  At my look of surprise, she continued on to tell me how I had helped her and that she found my words both inspiring and comforting.

I fumbled through my thanks and paid attention to her darling little daughter who was quite taken with me (and the necklace I was wearing).  So much so that when I stood up to go talk to another parent later on, the little one began to wail.  Her mother joked "She doesn't even do that for me!".  I made sure I gave her a cuddle or two.  I'm sure we will meet again.

Within minutes, another mother slid closer on the mat and mentioned that she too had read my blog and found it quite helpful.  Again, I mumbled a thank you (blame it on the night shift I had worked the night before) and we talked about our children.  I was humbled, but pleased that these parents too had found use in these words.  Before I left that day, I met another mother with twins, who had actually taken the time to contact me.  However, I had not received her letter and made sure that all three parents had my personal email account before I left (as well as the Facebook group and the Facebook page).  I had gone to mingle and educate myself and through that hopefully shrug off the blues that I had been feeling.  I got to mingle, that is true.  However I also found myself validated, encouraged, humbled, yet buoyed by the experience.  There have been times when I have questioned the validity and the rationale of doing what I do.  Thanks to these parents who took the time to personally thank me, to tell me of their experience as new parents of a child with Down syndrome and how my words eased that early transition and gave balm to their wounds, I found my drive again.  Seeing them interact easily with their children, the happiness on everyone's face, the comfort they had talking about this nuance or that one was sublime.  Knowing that I had contributed to this a tiny bit filled me with happiness.  I had inspired them and they had given me back a much needed spark. For that, I will be eternally grateful.

As these things go, after an initial meet and greet (and as the kids played around us), it was time for our guest speakers.  Sukaina quickly outlined her experience as a new parent 20 years ago.  She was told that her son may not walk, would not talk, would not amount to much of anything.  He would be very loving however and "hug everyone he meets".  As she was speaking, there was something about her posture, in her eyes that I recognized all too well.  Defiance, mingled with the all powerful protective instincts of a devoted mother.  She continued to say that she made up her mind at that moment that her son would walk, would talk and that he would NOT hug everyone he met.  He would shake their hand, greeting people cordially and respectfully, just like everyone else.  I could see her pain as she spoke.  It awakened my own.  Although all of this occurred 20 years ago for her and almost two years ago for me, the agony of it was still close at hand for both of us.

Abbas did grow to walk and talk and does in fact, shake your hand when you speak to him.  He did not address the group himself as he was a bit shy but was more than willing to speak to people one on one.  He has accomplished in his life far more than the average young adult.  One by one Sukaina pulled out awards and medals that Abbas had won in the Special Olympics.  He has been recognized by his community and by his country, being a recipient of the Government of Canada's Queen Elizabeth II Diamond Jubilee Award.  He is currently applying to college programs.  He continues to help out with the Special Olympics, coaching and inspiring kids.  I casually spoke to him later and he told me that he felt he didn't have "special needs" any more as he was an adult.  It was the young ones who needed the help now, he felt, and he was more than happy to give it back.  It was hard to keep my eyes from filling up as we spoke;  this was a young man that any mother would be proud of.  Full of light and laughter, but also possessing a practical approach to the world.  "My parents are y'know, getting old..." Abbas mentioned at one point, "... I have to do things on my own.  They won't be here forever".  I nodded in agreement as he outlined his eventual plans for school, for living on his own.  Plans which his mother confirmed to be very true much later.  We chatted easily about things, he and I;  Abbas' take on things was pretty much what you would expect from a 20 year old, eager to explore adulthood.  I enjoyed our short conversation very much.

I broke down while talking to Sukaina.  She saw it long before it happened, her eyes expertly reading mine.  I thanked her for taking the time to speak to us as we need to know what has come before.  I told her that I thought that this generation had it a little easier, although we still have light years to go.  She nodded sympathetically and seemed genuinely interested in my little efforts and gave me some sage advice about believing in ourselves and our child.  "Yes, exactly", I thought at the time, as her words, the voice of experience  soothed my doubts, my fears.  I hope our paths cross again.  We are in this special club together, as were all the parents in the room.  What I took away from our conversation rekindled my passion for my work here.  I hope she understands even a fragment of how grateful I am that we met.

The ideas, the stories, the articles, the pages, the branching out into social media... these are all work.  Although it is a subject that is dear to my heart and can be (and is) often lighthearted, it remains, well, work.  The words, sadly, do not flow effortlessly from my fingers.  Having found my desire to continue this work again, through the words of others, has been indescribably powerful.  Perhaps Mr. Berry had it right as it is the things that challenge us the most that have the most worth.  We're pretty close, the Muse of Form and I... Thankfully the universe throws people like Sukaina and Abass into my path now and again, to fill my sails anew with the determination to make this world a better place for my son.  Life is often full of obstacles and baffles us with it's complexity.  I can say, with much gratitude, that I have my family and all of you to inspire me and help me keep this course, no matter what twists, turns and rough waters may lie ahead.

Saturday, December 1, 2012

In the News - November 2012

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 of love.  These are from the month of November.

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

Happy National Down syndrome Awareness Week!


Down Syndrome Association makes strides in Sudbury

Talking about Down syndrome

Orange, state lag in mainstreaming disabled students

EXCLUSIVE: M&S unveil Christmas TV ad with a little help from the man behind Beyonce's Single Ladies video and the adorable Seb White (with not a celeb in sight!)

Extra Chromosome 21 Removed from Down Syndrome Cell Line
Lest We Forget


Would you "change" your child with Down syndrome?

VIDEOMugged By Sound, Rescued By A Waitress
BLOG Don't Label People with Down syndrome



Disabled Boy’s Family Faces $500 Daily Fine Over A Therapy Pet Pig

Actors with Down syndrome in more films, TV; 'Glee' star Lauren Potter says 'we're just like anybody else'
Downs Side Up Voted Top Blog

Disabled parents face bias, loss of kids

Rude content

Living with Down Syndrome
BLOG Boogie Wonderland

BLOG Marks & Spencer exploits vulnerable children for profit this Christmas!

Equip for Equality Victory Allows Kindergartner to Remain in Her Neighborhood School

Becoming a champion! and rocking his extra chromosome!

Lakeside homecoming queen with Downs syndrome to make TV debut
BLOG Why I'm Not a Fan of "Tard" the "Grumpy Cat"

We had our ninth T-21 Blog Hop on November 21. Join us for three days of excellent blogging on November 21! 

Our Facebook page has reached over 900 fans! Welcome to all our new friends. Please share!

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

I'm looking forward to judging November's Photo Theme "Thankful" Results to be posted lateron Down Wit Dat's Facebook page. December's Theme to be announced at the same time.

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

Friday, November 30, 2012

Why I'm Not a fan of "Tard" the "Grumpy Cat"

Every so often I find that I have to write a post like this.  It used to make me very angry when I ran into this sort of thing;  now, I just feel sad for people that clearly do not get it and have little intention of doing so.

Normally, I file this type of occurrence under "it will die in a few days and go away" but sadly, I am afraid this particular one won't for a while yet.  I'm talking about the current "Grumpy Cat" meme.  It's a cute cat.  I love cats.  In fact, I love all animals.  However, this particular animal's owners need a swat in the nose.

This "Grumpy Cat" as it is known, is a female cat and in the videos that the owners have posted on YouTube, it is a fluffy little sweet tempered doll of a creature.  However, it is unlike other cats, a fact that is made apparent quite quickly.  Her eyes are wider spaced and shaped a bit oddly, her nose is flatter and more button like than either of her parents, her jaw appears to be stronger and have a bit of an "underbite".  The ears are smaller and rounder too.  Sound familiar?  It should, as I have described all of these as markers of Down syndrome (and a few other genetic disorders).  "Grumpy Cat" obviously has some kind of chromosomal disorder, which is what gives her her distinct look and looser gait.  Like both feline and human versions, all these traits do occur randomly in the general population.  However, all together it is pretty indicative that a little something extra went somewhere.

Now my aim here is not to disparage the little thing.  Chromosomal disorders are quite common in the feline world (as they are in the human world).  Tortoiseshell cats, for example (of which, "Grumpy Cat's mother is one).  I did not know that male Torties could exist but they do as well;  they are all Trisomies.  We used to have a long haired female Tortoiseshell cat with thumbs that had a sweet disposition as well.  We chose to name our darling cat Fenchurch.

"Grumpy Cat's" owners chose to call her "Tard".

Once this factoid became a little more well known, it was retracted and changed.  The official story now, a few months later is that although they call her "Tard", her actual name is "Tardar" as in "Tardar Sauce".  The spelling error was explained as she was named by a small child,  at least on the talk shows.


I'm not sure which is more insulting.  The fact that they named this cat "Tard" in the first place, or the fact that they tried to kick a bit of litter over it after the fact.
This wouldn't be such an issue if this was some anonymous lady's cat down the street.  But, she's not.  This kitty now has it's own Facebook page, Twitter, Tumblr and is actively being marketed with a line of merchandise, not to mention being turned into countless meme images by fans every day.  Most just refer to it as "Grumpy Cat" but the YouTube videos and Tumblr account still tell the tale of this little cat and her offensive name.

Even if she was, say,  the cat of an older lady down the street does that make it right?  What if I got a Bull Terrier and named her "Dykstra"?  What if I named a Siamese cat "Chinkerly"?  Do the obvious short forms of those names strike you as something that should be condoned, shared, marketed and taught to my children?  Even if I blame it on the kids?  Do you think my neighbours, my sweet Trinidadian neighbours, for one second would tolerate me calling a black lab after the mascot of "The Dam Busters" Royal Air Forces No. 617 Squadron?  Imagine me, standing on my back porch, calling this dog and my children in for supper.  Would some hasty explanation involving Lancaster bombers, the Möhne Reservoir and WWII ease their hurt feelings?  I doubt it highly as in this very hypothetical case I would have chosen to name my dog, regardless of intent, a very offensive word.  So offensive, that charges might even be laid.

The owners of this cat knew full well what they were doing.  The word, whether a short form of it's "full" name or not, is a slur that has been used to degrade, humiliate and even exterminate people for being different.  Ironically this is exactly what we are celebrating this feline for.

There has been a lot of backlash in many forums when people bring this point up.  The usual arguments, including freedom of speech, citing what the cat's "full name" is, you're too sensitive, calling a plea for tolerance 'political correctness'...  all show how ignorant and willfully blind people continue to be with the intellectually challenged.  My favourite one of course, will always be that "[R-word] people don't know that it's wrong, they won't know what you are saying" which totally negates any sort of cognitive or emotional reaction from a developmentally delayed person, which in turn dehumanizes them even further.  That particular "argument" is ignorance and Abilism incarnate.

As I've said before, I love animals.  I treat them with the utmost respect.  I do the same with humans too, even if, based on their actions I don't think they really deserve it.  Amazingly, fans of this special little kitty get their fur up quite quickly when you suggest that the cat's name is offensive.  Well, as a Mom of a kid with Down syndrome, I'm here to tell you it is.  I'm also not alone in my opinion.  I wish her owners and many of her fans would extend to humanity the same respect that they lavish on this cat.  Back-pedaling and calling her "Tardar Sauce" or "Tardy McFluffypants" or "TARDIS"  or anything of the sort to cover you calling a cat with an obvious chromosomal disorder "Tard" is just ill conceived, stupid, ridiculous, slow and quite feeble minded.

You know, all the things that people use the R-word to mean.

Sunday, November 25, 2012

Boogie Wonderland

"No vacation goes unpunished." ~Karl Hakkarainen

[Warning: This post contains detailed descriptions of mucous, boogers and related grossness. In the event that you are not immune by being a health care worker, a seasoned parent or a seven year old boy, viewer discretion is advised. You were warned. *Cough*]

One of the perqs of being a "senior" nurse is the vacation time. Although we don't spend it all in one place usually, it helps to try and regain some semblance of a work-life balance. It's given to us in hours, which when you apply it to shiftwork, can have some pretty cool results. I work a wacky schedule that sees me work two twelve hour day shifts, two twelve hour night shifts and then have four or five days off before starting it all over again. I've spent 45 hours (4 shifts) of my vacation bank this week (as I refuse to work on my birthday), which when added to the five on either side, gave me 14 days off. Sha-ZAM!

Sounds great right? It certainly was leading up to it. I was almost skipping out of my last shift; it was truly difficult to resist shouting "So long, suckers!" at my relief that morning. I was OUT. I was DONE! I was on vacation and I HAD THINGS TO DO AROUND HERE!


Enter the Virus.

This house has been besieged by one bug or another since Quinn returned to school in September. First we had a round of colds which, in all fairness, were pretty tame. Except for Sean who, for a guy that only gets sick once every 3 to 5 years, got a whopper. He was completely miserable for a full week. I thought I was coming down with it for 12 hours, only to have it go away. It powered through all three kids and then finally sidled off into the sunset, only to be replaced shortly thereafter by Boogie Nights.

I went in to get the babies up one morning, only to find my son's face to be two thick streams of greenish mucous. Oh the huge manatees! I had never seen anything like it. He looked like a walrus. I can handle most things, but boogers and spit are two of my least favourite. He didn't seem to be too troubled by it, other than flinching when I attempted to wipe his face eleventy million times a day. His sister got it a few days later and Quinn after that. I had a few hours of it and then it was gone again. Sean, well, his cough came back. They all ended up with a cute little smoker's cough and I was happy to see the ends of the walrus impersonations (and the fights to suction out their little heads).

By this point, it was the beginning of November. Quinn decided to start having nosebleeds, probably to break up the monotony. An increase in the overall humidity fixed that. However, I found the kids with runny noses again, this time clear (much to my initial relief) and we started all over again. This bug quickly became "Boogie Wonderland" as sticky booger bits were everywhere on the kids. They were stuck on their nose, they were on the backs of their hands, they were stuck in their hair. They hung on like little hitch-hikers and needed a firm swipe with a baby wipe to remove them safely. All the kids learned to duck and cover when they saw me coming as it meant I was going to wipe/pick off/deal with some nastyness or another. Again, I felt crummy for 12 hours or so, but it cleared up again. Eventually this too settled down, everyone was sleeping again, coughs were productive and disappearing and I was poised to take vacation.

That was my mistake, right there.

Yes, we are talking about colds here. However, when you have Trisomy 21 (and an AVSD as well), you can get very sick, very fast. What is a cold for Zoe and Quinn could quite easily be pneumonia for Wyatt. I don't keep my kids in a bubble, far from it. However, this little factoid kept me awake many a night. Is he breathing okay? Is he blue?

About a week ago, his cough slowly became drier. I listened for the bark of croup and was sort of denied. Sort of. We proceeded as if it was croup and dealt with any fevers that popped up. As time went on however, it became more evident that he (and the other members of the family, but to a lesser degree) had what became known as the Martian Death Cough. The kids would wake up with their noses almost sealed shut with dried greeners. Then the coughing would start, the chest-burster cough that seared your throat dry. Once it really took hold, they would cough all through the night. Zoe had it first; she became more haggard looking every day as she lost more sleep because of it. She would cough and cough and her eating almost ceased completely. She even developed a new phrase "ohhh noooo!" Between coughing fits she would walk around and declare "ohhh nooo!" and be our own little Voice of Doom. We pushed fluids and tylenol and one night she actually got some sleep; by morning she looked a million times better.

Then it was Wy's turn.

He coughed off and on through the night for a few days without much problem. We pushed fluids and dealt with fevers as The Voice of Doom made sure that we took this seriously. He would cough and she would say "ohhh noooo!" very dramatically and look very sad. Then, somewhere around Thursday, things started to really worsen. His chest was an orchestra of rattles, squeaks and groans and you could see that his breathing was faster and took a lot of energy. As time went on, his hypotonia became more pronounced and he literally wilted before our eyes. Friday night was particularly scary, after listening to him cough non stop for what seemed like forever, I brought him downstairs at 4 am to asses him. He was burning up; in went the Tylenol and a bottle of juice. I had abandoned the sippy cup the day before as the need for fluids out did his need for oral development. You could see him using his intercostal muscles to breathe, you could see him assuming sleep apnea-head- thrown-back poses to sleep. He did start to look better once everything kicked in; I changed him into a onesie and went back to bed, one ear glued to the monitor. I could hear the chest noises through the monitor at times. He was going to the doc in the morning, no matter how much he rallied.

The doc agreed with me and stuck him on some antibiotics. I was a bit concerned at first as we could barely get the juice into him. His throat hurt badly from coughing and while all this is going on, he decided to try and grow some more teeth. Food was completely out of the question, even ice cream. What kid refuses ice cream? I even made some Italian wedding soup which was so chock full of yummy goodness that even big brother had two helpings. De nada. He was even fighting us on the Tylenol and liquid meds.

I spent last night glued to the monitor again (and snuck in there I don't know how many times to check his breathing). There were a few coughing fits, but not a lot. We are all sleeping in later these days, probably due to our nocturnal prowls, so I was pleased to see some of his spark back this morning when we woke them up at 10. He's even had some chatty bits today, which is encouraging. The indrawing is still there at times, but he is doing more. He's moving around the room again and pulling up on things, a feat that would have completely exhausted him two days ago. He's eating soft squishy things like yoghurt and applesauce and if I pretend to not see it, right now he's nibbling on a waffle while the boys watch the Grey Cup. Don't watch him eat it, don't even look at him. He may drop it.

Now it's my turn.

It feels like I am slowly being strangled and my chest hurts with the Martian Death Cough. Luckily, I can drink hot liquids and take things like Robitussin to help with the cough and Tylenol to get rid of my headache. I'm also officially on vacation starting today, so I will have plenty of opportunity to sleep (I hope). I will slather myself in Vaporub and steam the hell out of the bedroom with the vaporizer. I don't care as long as the kids are ok.

No good deed goes unpunished and, as it turns out, neither does any vacation. I should have known that slowing down would allow the bugs in. We are armed with plenty of fluids, Clorox wipes and healthy immune boosting num-nums so we should see the other side of this at some point. I look forward to the day where this place is no longer Boogie Wonderland. This was not the destination I had in mind for my vacation, but apparently this is what was needed for me to slow down. We are lucky... as I've said before it could have gotten very nasty, very fast. I also know many people that are facing so much worse with their kids right now. We'll take our medicine and count our blessings. In the meantime, pass the Vaporub. Menthol and eucalyptus are the new sexy.

Thursday, November 15, 2012

On Monumentous Moments and Maternal Melancholy

As many of you already know, time is a major theme with me.  I probably sound like a broken record (messed up MP3 for you young'uns), as I'm constantly repeating things like "time is short", "time is fleeting" and "time is moving way too fast".  Sometimes I think that half the reason I blog is to capture some of the little moments with my family;  to freeze them much like the photographs I take, with the hopes that I may trigger a memory with them at some point.  It may seem melodramatic, but sadly that is the way things are from where I sit.  Life, health, comfort, happiness... my memory...  these are all tender and ephemeral things.  Perhaps it is my profession that makes me melancholy at times, I don't know.  I do know that my life has provided me with a profound ability to appreciate the smallest gestures and revel in the seemingly trivial.

I also seem to lead a charmed existence of sorts.  As I walk through my days, certain coincidences always seem to line up.  My last post was exactly like that:  a random late night conversation with new friends, a late night post from an old friend, an ensuing discussion with new friends, a quote researched for the white board, a conversation with the old friend when I got home, a random search for an image (that just happened to come from the school that the old friend and I attended).  Boom.  One post.  Is it fate?  Karma?  I have no idea what propels me along.  Things just come together sometimes and I have learned over time not to question it, rather just to go with it.  The ride is smoother and it is amazing what one can come across along the way.

Now that we've made it out of October and the 31 for 21, it's time to catch up on a few things with the kids that I touched on here and there.  It's hard to keep up with us normally for heavens sake, but with 31 entries in the same number days, our little triumphs were easily shaded out by the sheer volume of posts. 

Weeding out the clutter is still an ongoing battle.  Since The War on Time and Stuff, we've been continuing on with our organization projects and the disbursement of the kibble that is currently choking up our house.  I've continued to sort out the babies' clothes and lovingly put some things away for keepsakes and put the rest in bags to go to various places.  Logically, this is a necessary step as the twins' room has been overflowing with big bags full of tiny clothes for weeks.   There was a curious emotional side effect to this particular project however;  there were (more than) a couple of times that I found myself in tears holding some little article of clothing or another.  It seems silly, even at this writing, as we need to get rid of these things that we no longer have a use for.  However, before I took this project on, I did not realize how big of an event this was.  You see, after Quinn grew out of his baby clothes, I carefully packed everything up and put it away "for the next baby".  There are no next babies for us now... even if I had wanted more (and I do, as it turns out), that is no longer possible.  Although the clothes will go to keep other babies snug and warm, they will not be my babies.   This is quite possibly a little selfish, I agree.  However, it is a sad thing to realize that your babies are no longer babies, but children.  As wonderful and heartening and grateful as that makes me, I still cannot help but feel a little sad.  We will have many new adventures together, my children and I... but this part of my motherhood is rapidly coming to a close.

The "boy" and "neutral" clothing was passed on to an expectant friend last week.  Although our friends arrived shortly after the twins had finished demolishing the living room for the day, we had a good visit.  Her husband sat down on the floor and tried to interact with the twins; Zoe hid and cried a little, while Wyatt simply spun around and turned his back to him.  It was hilarious.  The twins did settle down a bit before they left, so they did get to see a little glimpse into our day with babies, plural.  After our little visit, we loaded the bags into the back of their SUV and I had another twang of sadness as we shut the hatch back.  I'm sure my friend had a little more than a twang however, as her new son arrived less than 24 hours later.   Now that he is here, in a way it makes it easier to part with these things.  I'm sure my friend will find herself in the same position sometime in the future.

The babies themselves are flourishing.  I had mentioned in September that they had finally become the same size again and were now wearing the 12-18 month size.  Shortly after I published that, Miss Z decided to have a growth spurt and is now approaching the 18-24 month size (that's growing somewhere around an inch in length in two months). I've moved the clothing in the organizer over as I said I would and I've dug out all the size appropriate bags and gotten the "next" clothes ready for the day I have to grab them in a blind panic.  It doesn't sound like much, but it involved a lot of sorting, measuring, washing and folding.  Took me most of a day in fact. The next thing of course, will be organizing all the winter gear.  In Canada, that's a big deal, especially with three kids.  It has to be warm, washable, waterproof and be able to withstand temperatures ranging from 10 °C (50 °F) to -30 °C (-22 °F).  The weather has been holding so I haven't been forced to face this reality... yet.
An equipment overhaul has been necessary too.  Although they are still little compared to their peers, they have outgrown their 'baby buckets'.  Sean spent a good part of today outside trying to figure out how to install the new forward facing car seats in the Whaaambulance.   It is almost as important to figure out where in the van the seats are going to go; this little issue presents it's own logic puzzle:  
"The Whaaambulance has two bench seats in the back that hold three people each. There is one ambulatory baby, one active six year old and a baby with DS who can't walk yet. Each baby has a new car seat and the six year old needs a booster seat.  The van only opens on one side, with two doors that open at 90 degree angles to the van.  Where do you put each seat so that Mommy can safely put the babies in and not aggravate her bad back? Where does the six year old sit to not feel left out?  Who needs to sit in the front seat more?  Please provide rationales for each."
I have no idea.  So far, we've got the baby seats sitting at the ends of both benches and the booster seat on the far side of the back bench.  Assumedly Wyatt is behind me and Zoe in the back with her brother.  This may all change by the weekend, but its the best we can think of right now.

Wyatt has also graduated from a giant high chair to a booster seat, which puts him on par with his sister (and frees up more room around our kitchen table).  We have also made big strides with his self feeding.  I mentioned in To Sip or Not to Sip that I had a plan to get Wyatt to stop drinking from a bottle and drinking from either a straw or a cup.  The cup is still very much a work in progress;  he takes it right out of your hand and fiercely guards it from you as he gulps/pours the contents down his front.  He also likes making it rain milk, so we really only do the cup thing when we're just about ready to mop the floors.  All kidding aside, he aspirated some milk one afternoon and with him already having a virus, I was a little concerned about it going to full fledged pneumonia so I put a stop to the cup for a bit. He also can't quite get the idea of the special spoutless Avent cup, so his sister has gleefully taken those over for now.  What he has done is master the straw.  We had a straw sippy cup for each of them that was a little more flexible at the bottom that we could squeeze a bit up into the straw  (I was delighted to find them in our collection of sippy cups that I had picked up/been gifted at some point).  I had to squeeze the bottom only a few times before he grasped the concept.  He would initially only take an ounce or so (before getting tired) and I would have to put the rest in one of the other cups that he was proficient with.  After a week or so we switched to "straw boot camp" and he was only given one of the straw cups.  Much to our delight, he quickly became more proficient with it.  He still plays with it and chews the straw a bit.  Much like the other cups, he can also wing that sucker halfway across the room.  But, he's using the straw and preparing for proper speech sounds, which is the main thing (and I didn't have to resort to the bear bong).

Zoe's language has exploded in the last little while.  I swear, in the space of a week, she went from babbling to a mix of phrases and single words.  She can also count to six, which just about blew my mind when I heard it.  Sean, when doing up the snaps on their jammies, counts them out one by one.  It's a cool trick as it gives the kids something to concentrate on and eighty percent of the time it prevents you from wrestling with a toddler doing the 'gator-death-roll.   Wyatt's crib is by the light switch in the room; although he can't reach it, she certainly can when she is there.  One day Sean was changing Wyatt and Zoe was standing up in Wyatt's crib;  as the light clicked off, she said "un!".  She clicked it on again and said "tooo!".  Off and on the light went until she got to "sick!" and then she cheered and clapped her hands. It is wonderful and terrifying all at the same time.

Wy is busy pulling himself up onto his knees whenever he can.  He is a determined little boy, of that I have no doubt.  I have opened the gate to the living room, half carried/half been dragged by Zoe to the table, buckled her in her seat and returned to find him halfway there.  Now, he easily pulls himself up to grab a toy off the table, to check for snacks, etc.  He's also demonstrated that he can cruise along the edge of the table on his knees, which is encouraging.  No one showed him how to do that, he just adapted on the fly (as he wanted a toy off the end).  The fact that he did it in front of his ICDSP worker made it all the more sweeter.  His speech has come a long way in the last month or so too... Mum-ma is still a little while off from being a regular occurance, but his sounds and interactions have increased exponentially.  He is now full-out babbling at times, has added just about all the consonant sounds and will get your attention any way he can think of.  If you manage to not pay attention to the "AYAH!" (his version of "HEY!"), or the screechlike babble that follows it or the waving/hand motions, he'll crawl over and pull on your pantleg.  If you still ignore him (as I pretended to do one day, wondering what he would do), he'll just flat out bite you.  After the inevidible yelp, you will look down at him gazing up solemnly at you as if to say "Well, I bloody well have your attention now, don't I?"

Tomorrow, they will be 21 months old.   I am mortified.  They are no longer babies, but toddlers.  It is a bittersweet time in all our lives.  Soon, Wyatt will be standing.  Soon, Zoe will be carrying on a full conversation.  Before we know it, they will be Quinn's age and in school (I am still having trouble comprehending that he is six).  In 3 months, they will be two.  The broken record (MP3) skips along in my head as I say this.  Where has the time gone?  ...Time... Time... 

I can't help but get a little wistful about it.  There are so many adventures ahead, this is true.  So many things to discover, so many skills to master, so many obstacles to overcome.  I will allow myself this small melancholia, tho'.  Within it's sad embrace lies a bigger oppourtunity, to reflect on how far we have all come.  Physically, mentally, emotionally... yes, even spiritually.  Our journey together has gone some places, man.  We have seen some things.  But for now, I will wax philosophical on the passage of time and yearn ever so slightly for the days when they were very little again.  For as they age, I do too, a fact that isn't completely lost on me.  I will sit and ponder this fact a little while before being distracted again;  for melancholy, like a cup of tea, never really gets finished in Motherhood.  I'm sure like most Moms, I'll warm it up again from time to time, only to be called away by something else.  Right now however, the cup is warm and I will savour it's draught.  It smells of bergimot... and baby shampoo and new beginnings.

Sunday, November 11, 2012

Lest We Forget

Today's post is a little different than what most of you are used to; we will return to our normal family escapades in a few days, rest assured.  However, today is November 11th or Remembrance Day here in Canada.  Amongst the usual posts of respect and reverence for our military in my news feed early this morning, I found this piece.  It is written by an old friend...  Our paths diverged when we were much younger;  I went on to be a nurse and serve my community,  he went on to serve his country.

We have a proud military history here in Canada.  We do not have the largest standing army, the most impressive navy or the latest jets in our air force.  However, we are well respected Peacekeepers.  My children are descended from distinguished veterans from both sides;  although neither Sean nor I chose this path for ourselves, we have a deep respect for those that do.

This day means many things to many people.  Some would rather that it never happened at all;  that is their right.  However, to those who have served, know those that have served or have family currently serving, this day is one of reflection.  It is not to "glorify" war, rather to recognize those that have gone before.

Today Canadians (and Americans observing Veteran's Day) will hear many stories of years gone past.  Instead, I will share a story that is ongoing.  As our first guest post on Down Wit Dat, on this November 11th, I give you "Jeff's" story.  Originally posted humbly as a status update to friends, I have gotten his permission to share his reflections here.

"As I sit here contemplating Remembrance Day, I have several thought I wish to share.

I am a former soldier who served my country for 14 years, and for the past 11 years, I have served and protected the citizens of Toronto. I never fired my weapon at an enemy, and I don’t consider myself a veteran.

As a young soldier I remember my first Remembrance Day parade, I recall the very old men who struggled to stand for “O Canada”, many in wheel chairs, with old faded medals pinned on their chests. These men were truly the last of the old breed, they were the last First World War vets, by then into their 90’s. I was struck by the look of sorrow on their faces during “Last Post” as they recalled those who never came home. Those men carried with them the horrors of war all of their lives and they never forgot.

More recently, in my new life, when news of a Canadian soldier being killed would come on the TV, I like all former soldiers, would covertly listen in. Our thoughts would go to friends that were overseas, silently hoping they were ok. I wondered if I would recognize the names I heard. Many times I didn’t recognize the names, sometimes I did. I like many former soldiers struggle with the decision I made to leave the army and whether I left the hard work for others to do.

In my new life I was often required to assist in the Repatriation of the fallen soldiers. I would take up a traffic point and when the motorcade passed me I would come to attention and salute. I promised myself on that first Repatriation, that I would remember the name of each man (and eventually women) that passed me. But, as the years went by and the number of times that I stood and saluted a fallen soldier went past 30, maybe even 40 times, I lost track. Both of the number of time I stood there and the names of the men and women that I was there to honour.

The names and faces of these men and women faded from my memory and the novelty of a Repatriation duty became a well practiced routine. I do however, recall one day that will be with me for the rest of my life.

It was a sunny fall afternoon and I was at my usual intersection. As I had maybe 25 times before, I stopped all the traffic. I turned as the motorcade approached; I came to attention and saluted the hearse. As the hearse made the turn, it slowed. The limo that carried the family stopped momentarily in front of me. The window was open and a boy perhaps 3 or 4, the young son of the fallen soldier solemnly returned my salute. I was struck with the sacrifice that that young boy had made for his country, and by the fact that he didn’t even know it yet.

At 11am today where ever you are, please pause and reflect on the sacrifices made by our soldiers, sailors and aircrews. And, also by the sacrifices made by the parents, widows, and children of those who will never come home again.

Lest we forget"

I have little more to offer here other than to say thank you, to those who have served or are serving.  Thank you still to the families of those who did not make it home.  Lest we forget their sacrifice.  Lest we forget the horror, lest we forget peace.

They went with songs to the battle, they were young.
Straight of limb, true of eyes, steady and aglow.
They were staunch to the end against odds uncounted,
They fell with their faces to the foe.
They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,
We will remember them.
-Laurence Binyon, "For the Fallen"

Photo courtesy of York University
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