Choices

When I started this blog a few months ago, there were certain topics that I swore I would never write about.  In fact, I can think of a hundred other things that I would rather talk about right now;  unfortunately those topics aren't jumping around in my head looking for attention.

There has been a lot of buzz in the DS community lately.  It started with an article in the NY Times Magazine about Dr. Alberto Costa and his search for a drug that would help increase the mental functioning of those with Down Syndrome.  There have been some advances in prenatal screening published in the meantime.  Then this story hit:  Plans to make Denmark a Down syndrome free perfect society.  That prompted  Margaret Somerville, the founding director of the Centre for Medicine, Ethics and Law at McGill University to write this article for the Globe and Mail.  Based on her article (the only one I read initially), it sounded like the Danes had taken a page out of the Nazi Eugenics Handbook.  The article alleges that prenatal screening in Denmark is used for the sole purpose of wiping people with Down syndrome out.  Naturally, as a Mom of a kid with Down syndrome, I was upset.  So, I started digging.

I found the "Plans to..." article easily enough as it had been quoted by every Down syndrome advocate blog from here to China... another country that keeps coming up in this discussion due to their "one child only" policy... but I digress.  The article uses some pretty inflammatory language, yet offers little or no proof that this is happening.  For example: "Since 2004, when Denmark decided to start controlling the number of children born with Down syndrome, the cases have fallen by around 13 percent annually."  Wow.  I immediately went looking for anything that would outline this policy for me.  I didn't find anything other than a couple of studies evaluating the effectiveness of Denmark's new prenatal screening programs.  I did find an article in the Copenhagen Post, quite probably the one that started the whole mess.  "Down's syndrome Dwindling".  It offers up the same statistics that the studies did and oddly quotes the same people... a full month before the "Scancomark.se Team" wrote their article.  Aside from possible accusations of plagiarism, the "Plans..." article is little more than spin... to incite and inflame.  Which in a community of genuinely concerned parents, if you'll forgive me for saying so, isn't all that difficult to do.

The women in Denmark, just like the women in Canada, are offered free prenatal screening and care.  They do not have to participate, but not surprisingly, most do.  Here in Ontario we have IPS or  Integrated Prenatal Screening.  They test for Down syndrome, Trisomy 18 and open neural tube defects (Spina bifida).  I've been through it twice, once per pregnancy.  It is not government mandated, many women don't bother with it (usually for religious reasons) and many, like me, use it for informed choice.  Healthcare professionals here are mandated to provide all options to the patient for an informed decision.  That is what this whole thing is about:  choice.

I have always been "Pro-Choice".  That does not mean that I promote termination of all pregnancies, that means I promote choice.  Options.  As in what you want to do with your body is up to you.  Subsequently what I choose to do with my body is up to me.  The abortion rate for Down syndrome fetuses is somewhere around the 90% mark;  that does not surprise me.  I am not and no one else should be here to tell you what to do if you find yourself in those shoes.  But, that is only one choice.  The other provides the opportunity for informed parents and the creation of support systems prior to the birth of the child.  If there is one thing that I wish I had, it was more time before they were born.   

As it turns out, prenatal screening caught Wyatt early on.  When we visited with the genetic counselor however, we were told that with all the factors, the odds of him actually having DS was 1:300 (down from 1:125).  You can read the whole story here.  With those odds she wasn't even going to suggest amniocentesis, not that we would have taken it as the risks of a miscarriage due to the amnio were much higher than actually having a baby with DS.  Then there was Twin B to think of.  They would want to do amnio on both of them.  We made our choice and said no thanks.  Maybe if there had only been one baby, maybe we would have pushed for the amnio.  I don't know.  I don't know what we would have done because the circumstances were so different.  Either way, we would have had to make a decision.  Which is what we did.  Then we got on with our lives.

If it hadn't have been for my OB sending me for a fetal echocardiogram, we would never have known about Wyatt until we got into the delivery room.  Instead we had a month to prepare ourselves and get our heads around the fact that we were going to have a baby with special needs, not to mention a congenital heart defect.  That helped.  I will also note that I made two other choices in there:  when I went to Sick Kids to meet with the fetal cardiology experts, it was brought up that I would have a "very strong case" for late termination.  I would meet with an ethics committee who would hear me out, if I chose and it would most likely be approved given the circumstances.  I didn't even let him finish.

Later on, my OB suggested that I could have amnio at 35 weeks; I didn't let her finish either.

I made my choices and I am so very glad I did.  Wyatt is a happy, bright little boy who's heart has defied the experts.  He has taught me more about life in the six months that he has been on this earth than I could ever imagine.   I am proud of all my kids as they delight me daily;  Wyatt is certainly no exception to that.  In fact, just like everything else he has done so far, he goes that extra little bit and teaches me joy.

Prenatal screening is important so that whatever your decision, whatever your choice, it is informed.  What you don't hear people talking about is the opportunity it provides to get to know more about and bond with the little person.  With most women in Ontario, their IPS ultrasound is the first one they have had in their pregnancy.  It is the first time they hear that heartbeat and see exactly what is going on in there.  It was during my IPS Step one ultrasound that I found out [read: confirmed] that I was having twins.  One generation ago I would have been completely stunned when I found all this out in the delivery room.  I cannot fathom that level of unpreparedness!
 
What you will find me bemoaning is the lack of research and support for post-natal care.   Dr. Costa's research is a step in the right direction, however it is funded.  I don't want to change my son, I would like him to be the best that he can be.  If that means I give him an antidepressant or an anti-Alzheimer med every day for the rest of his life, then so be it.  I don't have any wild delusions about how he will be helped by this, I'm not expecting algebra.  However, if it means the difference between him articulating a thought or feeling clearly or not and becoming very frustrated, you'll forgive me if I choose the former.

It's entirely possible that Denmark will be DS free by 2023.  It's also possible that they will still be an insular society of very calm northern people with wild, Viking roots.  Let's face it, at no point in my life have I ever heard "F☠ck this!  I'm moving to Denmark!"  Down syndrome could quite possibly be rarer there than snakes in Ireland.  However, maybe not.  Maybe some will choose differently.  That would be up to them.

Prenatal screening is not the enemy here.  Ignorance and "knee-jerk" reactions are.  Advocacy may take on many faces, but none of them should be wearing blindfolds.  Instead of crying over who didn't come to the party, let's focus on and celebrate the ones that did attend.  Let's make those people's lives better and brighter.  As a mother, I want my children to realize their potential.  As a mother of a child with Down syndrome, I want my son to be able to reach for any star he chooses.  It's my job to make sure that he is given everything to do just that.  I won't be able provide what he needs if I'm living in the dark and busy theorizing about what the neighbours might do. 

It upsets me when a whole community, regardless of the cause, gets up in arms about misinformation.  It also upsets me when individuals represent themselves as one thing when they are really pushing the agenda of another.  These are difficult shoes that I walk in;  I'm not going to insist that anyone else walk in them or judge them when they choose not to.  Informed choice is one of the most basic rights that we in the Western world have.  I urge you to exercise that right and to educate yourself as much as possible whenever possible.

Especially when it comes to the kids.  Especially when those kids have DS.

Zoe

I've been through a bunch of entries on both blogs and have come to the conclusion that Zoe needs a little time in the spotlight.  I'm sure that as time goes on, my wee gal is not going to have any problem at all making herself heard.  Oher than her surgery, it may seem that she is easily overshadowed by her two brothers.  We were very concerned for her after Wyatt's diagnosis as we were afraid that exact thing would happen.  Allow me to set the record straight;  that is hardly the case.

I joke frequently about her screaming, but rest assured that is reality.   At first it was mainly due to colic, but now we are well into the second month or so of teething (we have yet to see a single one).  I swear I spend a good 1/2 to 2/3 of the day just on her alone.  Not all that time is spent being miserable tho';  a good portion of the time she is the funniest baby I have ever met.  Hands down.

I has shooz. (almost 6 mos)

To start with, she communicates in a series of sneezes.  I'm not kidding.  It started out with a real sneeze one day and I mimicked her.  She sneezed another time and I mimicked her again and she smiled.  I sneezed one day and she mimicked me back.  Now when she sees either Sean or myself, she snorts and sniffles, all the while grinning and giggling, thinking we are having the best of conversations.  It's really hard to explain to people.  Is she allergic?  No, she's just saying hi...

Two weekends ago we were at friends for a playdate and dinner.  Staying true to form, she became fussy in the late afternoon.  I've taken to dealing with her screaming any way I can;  in order to bring some levity to what was going to become very loud, very fast, I took my finger and tapped it on her mouth as she was whining, making a "wah-wah" sound.  She stopped.  I did it again.  We did this off and on for a good half hour, me laughing like crazy and her thinking it was the best game ever.  We went home that night and promtly forgot about it.  Two days later, she is sitting on my lap and "talking" (that little burbly throw in a consonant here and there babble that babies do).  Suddenly she grabs my hand and puts my finger in her mouth to make a "wah-wah" noise.  Then she giggled.  She hadn't forgotten about it.  She will do this at least once a day, when she's not trying to actually gnaw off one of my fingers.  Or eat my face.  Apparently she is part cannibal on her father's side.

Don't let her fool you...

Her smile is the best, hand down.  It is probably not all that great by baby standards, but since most of my day is either spent praying that my hearing finally goes or that she goes the f☠ck to sleep, it is a thing of beauty when it arrives.  I have yet to fully capture it's glory, but this is the closest I have come so far:

Whee!  (3 Mos)

It starts out crooked and then takes up most of her face as she scrunches her nose and snuffles at you.  I hope to immortalize it in all it's gummy glory before those (damn!) elusive teeth come in.

Now, this is the part where I nominate myself for Mother of the Year by admitting that I accidentally call her the wrong name all the time.  I'm not talking about the "Sean-Wyatt-Quinn...YOU!!" thing that all mothers do (I am sad to admit that I do it), but rather a totally different name all together.  Specifically, I accidentally call her "Fenchurch".  Other than Arthur Dent's girlfriend, Fenchurch is my cat.  My dead cat.  You can read all about that here.

I accidentally started calling her Fenchurch about the two or three month mark.  I really don't know how it started, but I'm betting the sleep deprivation had a LOT to do with it.  Fenchurch made a lot of weird noises over the years and I think could have contributed.  Zoe makes a lot of whining/whimpering/mewling noises that sound like kittens, puppies and occasionally piglets.  She is also super intense like Fen was [read:  nuts].  These are guesses at best but it took me two weeks of thinking about her as "Fenchurch" before I accidentally called her that one night at the bedtime feed.  Sean leveled his gaze for a moment (most likely assessing my level of crazy) and then remarked that "they might just be Sable and Fenchurch, you don't know". I'm pretty sure they are not and the cheese has just slid off my cracker a bit, but he gets uber bonus points for being such a sympathetic husband.

Zoe is exactly like me.  Now, I know a lot of Moms say this about their kids and they might be right... and I do believe I said this about Quinn.  Believe me now when I say she is exactly like me.  Exactly.  From the "want" line on her forehead to the mole on her hip, she is a carbon copy, miniature me.  That scares me a bit, but other times it's hilarious.  Like this morning, when she couldn't seem to get her eyes open...

She needs her coffee too.

By the way, not 3 minutes later...

And the day usually goes from there.  She refuses to nap other than in 5 minute bursts.  By the way, when that unlikely event does happen, a bomb going off will not wake her up.  My eyelids closing?  Loudest sound on earth.

So there you have it... up close and personal with who I think is the most personable baby on the planet.    Daily she makes me laugh (and cry).  She may be the only girl and she may be the "youngest", but we have no delusions about who will eventually be the Alpha in our little brood. 

God help us when she learns to crawl.

Tempus Fugit

I am absolutely gobsmacked.

I cannot believe that they are 6 months old today.  Six months.  Time used to be my friend.  Then, one day, I caught her whispering about me behind my back...  Then things got awkward.  Now, we pass like strangers, no longer making eye contact and no longer on speaking terms.

Six months ago today our world was officially turned on its ear.   Six months ago Wyatt decided that he was making a break for it and dragged Zoe, kicking and screaming, into this world.  She hasn't stopped doing either since.

Six months ago I made a decision.  As I lay there after my surgery, in pain and missing the familiar movements in my belly (that were now living in the NICU), I told myself that no matter what the outcome, I would fight for my son.  Make no mistake, I would fight to the death for Quinn and Zoe as well;  when it comes to my children I am like any other Mama bear.  This is different.  I did not know at that time the full extent of Wyatt's heart issues.  I did not know what other characteristics, hard markers or physical deformities that he may or may not have.  I knew that he had Down syndrome and that he was my son.  My grief was so raw then I could barely draw breath.  As the clock ticked away the eternity between me and my pain meds, I made my plan.  I made a promise to my kids and I prayed.  Alone and in the dark, I prayed to whoever was listening to give me the strength to see through what I had to do. 

I would ensure that he (and his sister) had exceptional medical care. I would ensure that he had a loving home and was surrounded by positive, supportive people.  I would do my best to make sure that he had anything and everything that I could give him:  everything ranging from love and support to antibodies and DHA.  He would have all the encouragement that he needed;  we would make sure that he would be the best he could be.

It also meant learning everything there was to know about his "little extra" and what that would mean for him.  What that would mean for us.  What that would mean for his older brother who was not just displaced by a new baby, but two... and one with a disability.  What that would mean for his twin, the only girl in the family.

We would all have to overcome obstacles.  Our own prejudices.  We would have to change our way of thinking in order to fully open our minds to this little boy.  That would also mean distancing ourselves from anyone who was not fully accepting of any of us, not just Wyatt.

I also had just over six months to do this in, partially due to my return to work, but also because of Wyatt's surgery that was supposed to take place around this time.

I look at my son now and I am so very thankful that his heart decided to do a little DIY and essentially occlude the bottom of the AVSD.  He is still cool to the touch and more tired than his sister, but thus far we have been spared the heartache that the onset of congestive heart failure would have brought.  I try and imagine what it would be like for my tiny boy to be in the hospital, fighting for breath, waiting for the surgeons... and cannot.  Thankfully, I cannot.  I am so thankful to the powers at be, the positive thought, the fates, the gods, destiny, the universe, his mothers love, karma... or whatever it was that closed that hole when the experts said it wouldn't.   I used to joke that Karma owed me big time; I'm willing to consider us even.
 
Now, the time has gone and the countdown to my return to work is marching on.   We've met many goals and in some aspects, more so.  Wyatt and Zoe have done exceptionally well in this time;  Wyatt has had his surgery pushed back until he is 3 or 4 and Zoe had an unexpected hernia repair but has totally bounced back since then.  They are still small, but are slowly catching up to their peers.

They, and we, have come such a long way...

The next six months will see more challenges;  me trying to balance work and breastfeeding, Sean adapting to life at home, introducing solids to the babies, them learning to sit up and crawl... and so much more. 

On this night, six months ago, reaching this point seemed impossible.  The idea of a future where things became routine, almost commonplace with our family seemed ridiculous.  In my fever and pain, it seemed a distant dream.  Yet we are here.  Together.  Going about our day, much like other families.  The world did not end, I have healed and Wyatt is a healthy happy boy that today of all days, decided to smile spontaneously.  All day.  Non stop.

I am completely and utterly in awe of my life. In that life is a little boy with Down syndrome that has taught me more about living in the six months that he has been on this earth than I learned in the 39 years and two months that preceded it.  In his smile.  In his breathing.  In his little bean bag body that snuggles into my chest.  In the little hand that traces across my arm.  Our time together, however long or short, will not tick idly by.  It's already been six months.  Look how far we've come.

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Big and Little

I really have to give my head a shake sometimes.

Sometimes I have these ideas that are fantastic in theory, but totally suck when  I try to implement them.  Yesterday I thought "I haven't taken any pics of the kids lately... I should do that".  Later it was "Oooh!  when the sun comes around, I'll shoot them in natural light in the living room!  In front of the antique cabinet!  On the wood floor!  It will be all warm and natural!  We'll do jeans and bare feet!  AWESOME!"  [Enter other random squees here!  And more exclamation marks!!!!]

F☠ck no.

I started after lunch.  I cleared the playpen and the myriad of baby toys and equipment away, swept the floor and opened the blinds to let the sunlight in.  In the afternoon, there is a magic time where the light is just perfect, so this was going to work.  I was going to have happy full babies.  I was going to have a full 5 year old. This was gonna be good.

What I didn't allow for was the random spin of the Life wheel which came up "Five Year Old Freakout". I laid out Quinn's clothes on his bed and sent him upstairs to get changed.  When I was pregnant, I bought him a T-Shirt that says "I'm the Big Brother!";  I had laid it out with a pair of jeans.  He came down moments later in his shirt and Batman underwear.  When I asked what had happened to the jeans, he totally lost his sh☠t!  He screamed something about jeans being "boring" and "hot" and then stormed upstairs, crying all the way and slammed his door like a 14 year old girl.  WTF?

It took me half an hour to coax [threaten] him downstairs, get him changed and deal with the baby pukefest that had ensued after Dynamo:  The Kid Dramatic had his closeup.  All was well, I set him up in front of the cabinet... and he freaks out again.  "I'm not ready!  I'm not ready!", he cries, collapsing to the floor.  "And the Oscar goes to..."  Don't go storming back to your trailer either.

It's the end of the world...

Not less than two minutes later, he was back ON.  Here is the photographic proof:

I'm ready for my close up...

I'm not happy with the light as the dramatics had eaten up the perfect light time and the pics are a bit too dark for me... but that is just me.  Wyatt also is getting better with his head, but he also has a limited amount of time before he gets tired and he starts to droop.  We did get a good one of Quinn and Wyatt together:

My Boys

And a not too bad one of Quinn and Zoe...

Big Brother and Little Sister

Wyatt had definitely started to droop, but his pose makes it easy to explain away:

Hey, what's that outside?

I laid the babies on the floor and got a few things that I could play with later in Photoshop.  This is one of them:

Togetherness

Now that the smoke has cleared, I am going to revisit this spot again when the light is better and the little people are better at taking direction... who am I kidding?  That will never happen.

I think I'll just have my beer before, instead of after.  It and the session are a lot easier to enjoy when my eye isn't twitching like that.



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The R Word

When I started this blog a few months ago, the intention was to educate and spread awareness of Down syndrome.  I believe I have done that, in my own way.  I have tried to connect to a variety of sources and tap into a few things as I have gone along.  It has helped educate me and helped me become a better advocate for my son.  It's a pretty heavy topic... I have a pretty heavy life;  I try and keep things positive and uplifting for a reason.

That is probably why I am torn about writing this next entry.  I was tempted to fire it off half cocked and then I was tempted to ignore it. The concept and conflict have been rattling around in my head for a while. It's a highly political argument, one that is so charged with negative energy I hesitate to discuss it here. 

When that neonatologist shuffled over to me in the OR and told me that my son had Down syndrome, my world was changed.  Forever.  In an instant.  I learned over the next few weeks who my friends and family were and who I could count on in a pinch.  There are an awful lot of you and I have a great support system, both real and virtual.  I also learned that there were certain words that I used in jest that I wasn't going to be using any more.

My decision to stop using one word in particular is not going to be a surprise to any of you, neither is the word itself.  The R word.  The R bomb....

The word is "retarded".

I grew up in the 70's and 80's... a handful of years after they stopped institutionalizing mentally challenged people as a matter of course.  It was a totally different time.  If your IQ was in a specific range you were described as "retarded" by the medical community (meaning "slowed")  In common parlance, if something was stupid, it was "gay";  if it was really stupid, it was "retarded".  These were not meant as words to hurt either group, although a lot of that did go on and was socially condoned.  Those classified as "retarded" medically were often teased and bullied mercilessly.  The most common word was "re-tard" (as in "look at the ____ " and "you are such a ____").  If you had a differently abled child, you were pitied... from afar as you certainly kept your 'shame' within your own walls.

Flash forward to the middle 90's when "PC" or political correctness is all the rage.  We stop using "retarded" and start using "mentally handicapped" which quickly morphed into "mentally challenged".  "Retarded" was out, especially at work.  (A direct quote from a nursing prof.)  It all sounds so barbaric now, but those were the times.  We still used the word to describe foolish or stupid.  As time went on, it entered into popular vernacular to describe intoxication.

It's now 2011 and earlier this year the "Spread the Word to End the Word" was begun.  I've included the PSA here for those who have not seen it.



It's a "fair enough" PSA.  It gets the point across.

My conscious usage of the word ended the day I came home from the cardiologist in January.  Unfortunately, my unconscious usage of the word still surfaces once in a while.  I self correct... usually making a joke (as in "it's our word... we're taking it back!" or something similar).  It still happens once in a blue moon.  Like accidentally calling the three seater in the living room a "Chesterfield" or accidentally referring to my MP3 player as a "Walkman", the word bubbles up like many others of my youth.  It is not meant to hurt or demean anyone, most of all my son.  But, it's there.  It happens.  It happens less and less as time goes on, but it happens.

It happens to my friends too.  I went to dinner with a few friends last night and one of them busted out with it early in the evening.  She was frustrated and describing something ridiculous and out it came.  I chose not to jump down her throat, I chose not to point and yell and make her feel awful as some advocates would have me do.  I chose instead to wait until later in this conversation when we were discussing a question I had posted online earlier on.  When I mentioned it to her, casually, she did what I thought she would do:  she was mortally embarrassed and wanted to crawl under the table.  Her face said it all.  I didn't have to bitch slap her, I didn't have to do anything. My gentle friend was mortified and hurt and so very upset that she might have hurt my son or myself.  I brushed it off, but she will be more aware next time.  As will the rest of us.  As will the eavesdropping folks at the next table.  She did not mean anything by it; she simply slipped into the dialect of her youth, much like her delightful southern accent gets a little thicker when she gets worked up.

There are some advocates that would be quick to point out that by brushing my friend off, by minimizing her usage of the word, I was allowing it to happen.  I was creating safe harbour for the word and that makes me no better than bullies who use the word to hurt.  I couldn't disagree more.  Much like other words that have been stricken from the lexicon, you have to take away their power first.  Other groups have successfully used this technique in the past and have actually "reclaimed" words. In some of my women's groups, we use language to describe each other that traditionally has been used by men to hurt and demean.  By using words like "twat" and "bitch" and "hooker" and the almighty "c☠nt", we take away their power.  They become commonplace and in some cases, terms of endearment.  It also serves to create a barrier between us and the intended hurtful use of the word when it does occur.  It helps soften the blow.  I'm not suggesting that we encourage the use of the word "retarded" here, make no mistake.  I am suggesting that the best way to inflate it, to make it bigger and meaner than it already is and give it as much power as possible is to verbally and socially tar and feather anyone who uses it.

Change takes time.  Even in the first decade of this century it was not acceptable to use the R word in polite company.  PC was in a full rolling boil and if you used any word that could remotely be construed as being offensive to someone, there was somebody else ready to point a finger and make you feel like shit for saying it.  Somewhere around 2003 or 2004 I was working one night and had difficulty expressing myself in a key bit of charting, so I sought the aid of my colleagues.  I was reading out loud a part where I described a patient as having "psychomotor retardation" (a slowing of thought and movement) and an RPN that was working there (who was undoubtedly an idiot) hissed at me:  "You can't call them that!"  I looked up puzzled and was told "You can't call them that!  You can't call them re-tards any more!"  Ummm, what?  Even then, something that was well meaning initially, could be taken to extremes and used incorrectly by the ill-informed.

With my networking, blogging and various writing projects, I have entered into the Down syndrome community.  I have met some very nice people, some of which blog themselves.  Almost everyone I know is involved with the "Spread the Word..." campaign and the watchdog group that it has become.  The group has good intentions and you can pledge to stop using the R-word on the website.  Currently, what has this group and the rest of the DS community buzzing is a new film by Universal Pictures.  I'm not going to give the title here, but suffice to say that it is yet another rehashing of the body-switching theme from a tired Hollywood.  To be fair, I have not seen this movie, I don't have a copy of the script and the people at The R Word: Spread the Word to End the Word have not seen it either.  There are a few bloggers in the DS community who have seen it and I am quoting them third hand.  The movie itself is rated R for crude humour and language.  What has everyone in an uproar is a particular piece of dialogue;  one character comments on his friend's twins and asks "Why aren’t they talking – what are they retarded?” and then continues by saying "And this one, he looks Downsy."

Yeah, that's pretty harsh.  I have twins.  One more than "looks" a little "Downsy" too.  I probably will never watch this movie.  In all fairness, I don't have time to see a lot of movies (I can't remember the last time I was actually in a theater or what I saw) and I certainly can't afford it these days with the price of tickets.  I pick off movies on TMN occasionally and that little bit of dialogue pretty much guaranteed I won't be watching this one (as a personal choice). It was a bad call to keep that bit of dialogue in in my opinion, but by looking at the ratings, there seems to be a lot of bad calls regarding the dialogue and the movie in general, frankly.  It is tanking at the box office.  Hard.

Naturally, there is a call to boycott the movie, which in my experience doesn't do anything except encourage more people to go see the damn thing so they can see what all the fuss is about.  Quite a few of my movie watching dollars have been spent in just such a manner over the years in the pretense of "making up my own mind".  I'm not going to tell you what to do as that isn't my place.  Since I do not want to be associated with this particular movie, I choose not to include the title here.  What has me a little concerned is the next step from the watchdogs:  the call to write/fax/email/telephone anyone and everyone associated with the movie. I will agree that a carefully yet strongly worded letter or two has come from me over the years to various sources.  However, I have not engaged in "hate mail" which I am sure the producers, directors, writers, distributors and actors are currently swamped in after their public contact information was posted after the article for everyone's convenience.  What seems to elude most well meaning folks is that you are going up against an industry where any press is good press.  Even a retracting statement from a publicist or a "public apology" is still an advertisement for the movie.  Which makes more people go see it.  Which perpetuates the problem.

Even me mentioning it without mentioning it perpetuates the problem.

Instead of grabbing my pitchfork and joining the mob with this or any other blatant asshattery (which is what this really is...) I choose to make my stand elsewhere.  As an advocate it is my job to educate and spread awareness.  I have done that and will continue to do so.  I ask those around me to open their minds.  That is all.

Let the movie die a horrible, well deserved death.  It is going to do that, derogatory jokes or not.  Even twats like these guys really don't deserve an intervention.  These people do, along with possible criminal charges... However, the vast majority of people who let one slip are well meaning and good people.  In time, this will just be a memory.

In the course of this blog, you are following along with Wyatt as he grows and develops like other kids in some areas and not in others.  I will continue to chronicle as time and life allows.  My goal ultimately as a mother, as an advocate, as a blogger, is to educate those around me about DS through Wyatt.  Not in a demanding, foot stomping way, but in a way that promotes awareness through familiarity.  I want the fear and the apprehension of the unknown abolished.  I want you to be able to see him as I see him.  I want you to be able to look into his eyes as I do and see the beautiful soul that is there.  That is my challenge, to be able to put into words the honesty, the purity and the joy that is Wyatt.  It is still too early to see what obstacles he will face in his life, but I hope through me he will not have to face discrimination.  If and when he does however, he will be surrounded by those that love him for who he is, not what he is.

His name is Wyatt.  He is my son.  He has Trisomy 21, more commonly known as Down syndrome.  Sticks and stones will not break his bones and this word, this R word, will never hurt him.  It is my responsibility to change the world around him.  Not by might, not by force, but by love.  It isn't the easiest way to go about it, but it is the most permanent... and the results are beautiful.

"Water is fluid, soft, and yielding. But water will wear away rock, which is rigid and cannot yield. As a rule, whatever is fluid, soft, and yielding will overcome whatever is rigid and hard. This is another paradox: what is soft is strong."~ Lao-Tzu (600 B.C.) ~

Can You Hear Me Now?

This week's "doctor adventure" for the family involved taking Wyatt to the audiologist.  He was screened (as was his sister) in the NICU, but due to his Down Syndrome, he has a follow up regimen set out by Infant and Child Development.  This was his four month (corrected) appointment.

Since the "little extra" can affect all body systems, hearing is no different.  Kids with DS often have hearing issues that are congenital or acquired.  Most acquired hearing loss is due to ear infections, but wax buildup and a lovely condition most commonly known as "glue ear" (where gunk in the middle ear literally glues up the tiny bones and prevents them from moving) can also occur.  After our last trip to the ENT we were unsure as to whether there was any fluid accumulating in the middle ear (as he could not physically see the eardrums).

After arriving late (I can't remember when I was actually on time for anything since these babies have come along), we were shown into a tiny office with a tinier sound proof room off to the side.   We were cautioned during the confirmation phone call that Wyatt would have to arrive awake and then be able to fall asleep for the testing.  I thought at the time "good luck with that...", but I did my best to keep him awake on the bus ride to to the office.  Once there I took him out and bounced him around a bit (which made him smile that anime smile) to keep him from dozing off before we were shown into the little soundproof room.  I abandoned the stroller in the hallway, set Zoe in her car seat on the floor at Quinn's feet and Wyatt and I took our place in the chair in the booth.

I'm really not good with small spaces... especially ones that remove all sound (I find the silence very unsettling, and well, loud actually).  Even with the door open and a giant window, it still felt like an execution chamber.  However, I wrapped Wyatt in the quilt that his Grandma made him and got him prepared for his test.  First they cleaned and prepped [read:  roughened up] the areas for the leads and put them on.  He had a lead behind both ears and two on his forehead.  He hated this and he was pretty annoyed at all the pushing and prodding, but he completely lost it when she had to rip one of the leads off and start over behind his left ear.  Now that he was howling, she disappeared, letting me know that I should send Quinn out when Wyatt was asleep.  Whatever you say, cupcake...

He spent the next 10 minutes fussing.  Since his ear now hurt, it must have reminded him that his mouth hurt (both the twins have teeth on the way) so he was also chewing on his fingers... which also hurt.  I sent Quinn out to get the backpack, whipped out the Baby Tylenol and gave him a shot.  5 minutes later he was snoring and we could start the test.

The audiologist almost woke him up when she jammed the first tube in his ear, but he settled down again as I held my breath.  I say tube, but in reality it was a tiny speaker that delivers a series of clicks and tones that correspond to specific frequencies.  They test a large range and are particularly interested in the high end as these are the tones that tend to be affected first.  It was also explained to me that she would be paying particular attention to the low end as well;  the low end of the spectrum would indicate if there is fluid accumulation in the ear (which would have to be dealt with as soon as possible to prevent future problems). 

She had to do two more tests on him afterwards due to the results of the first, however in the end his right ear is perfect.  She stated that his left ear had some odd results that could be attributed to a small depression in the eardrum itself, or possibly the tube wasn't in far enough (remember, he has very small ear canals).  In any event, there was no concern for any long term hearing loss (as it stands now) and we would be retested at one year of age (corrected).  Fantastic.  There was also no sign of fluid in the ear, which was also a relief.  It was also pointed out to me that no matter how loud Zoe got, she would not contribute to any hearing loss at Wyatt's part.  Which was also great news as I got to watch the audiologist wince as my daughter's screaming could be heard through the walls of the sound proof room.

Such good news (and such good behaviour on Quinn's part) earned us a trip to Dairy Queen before we headed home.  Yum!  It was hot, so both babies slept until we reached home, which allowed Quinn and I some time together.

As I mentioned last week,  I can now cut out the extra calories (for the babies... did you think I was going to mean me??)  At this point, we've dropped the formula and are just giving EBM bottle top ups.  I'm not seeing any changes in them so I plan to start doing the bottle top up every other feed and then hopefully drop it once and for all.  Wyatt's head is getting steadier every day as well, so that brings us closer to starting solids soon.  I'm back to work in just over a month and I hope to have them started on some cereal at least (they will be getting entire meals by bottle when I am at work anyway). 

This week also meant the babies had to learn to sleep alone.  We've been really worried about this actually, since they have slept so well cuddling into each other.  Lately however, they've started disturbing one another and are getting too big to sleep across the crib.  Last Saturday we moved their room around and set up their very own spaces.  I lovingly set things up so that they each had something of the others with them.  I went to bed with one ear open, waiting for the inevidable wailing to start.

It didn't.

They had the best sleep that they have ever had.  They haven't slept like that since, to be honest, but they slept that night for sure.  Now when Zoe wakes up every hour or so, she isn't necessarily waking up her brother (just me).  Which is a good thing as Wyatt needs his rest.

More good news... it is always welcome around here.  We still step cautiously and take nothing for granted with the kids, Wyatt especially.  However, with each new smile, with each little chuckle, he is progressing.  Yesterday I got to see him waking up and when he saw me standing beside him, he smiled broadly.  That was a fantastic moment.  Tonight after dinner, when he reached out for Quinn who was sitting beside us... that was another fantastic moment.  We are slowly skipping from moment to moment with him as more of his personality comes out and he becomes more of the person he will be.  He studies our faces as we make sounds at him and he tries so very hard to mimic them back.  He 'talks' to us in a series of babbles and coos that are unique to him, including one that sounds like "Hi-lo" that he says a lot when he sees us.  Just his way of saying "hello", we guess.  There is progression; it is slow.  It's slowness serves to illuminate each of the new things that much more, to put it in the spotlight so that we can appreciate exactly what an accomplishment this particular thing really is.  Each new thing is so marvellous, so special, it is almost a gift.  A smile here.  A purposeful touch of my face there.  Gifts.  Each and every one.

Every single day.

We read you loud and clear, little man.



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