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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