What a Year a Difference Makes

One year ago today I was sitting in a neonatal cardiologist's office watching fish.

There were a variety of goldfish and a large sucker fish who was avidly doing its thing as it hung on the side of the glass.  It sat there, mesmerizing me and munching on microscopic algae as its tail waved in the current.  The hum of the filter provided balm to my already fraying nerves;  my aunt had passed away a few days before and I had just heard that a dear colleague had been almost killed in a car accident.  My belly had grown to enormous proportions and I could barely walk, stand or sit.  I was ignoring the itchy/sweaty/squeezy feeling my "batman" support tights were imposing on my lower half in the fight to keep me from getting a blood clot.  It didn't matter.  I was the sound of one hand clapping.  I was Zen.  I snapped out of my daze only slightly when my name was called and ambled into the office, a lazy smile on my face.

Less than half an hour later, Zen would be replaced by Stunned with an Underscore of Building Panic.  An echocardiogram on both my unborn babies had shown that baby B, my girl, Zoe, was fine but baby A, my boy, Wyatt, had AVSD and probably a chromosomal disorder, most likely Down syndrome. If the doctor had leaned over the counter and slapped me with a dead fish, I would not have been more surprised.   I listened and made notes and teared a little. I (somehow) had the presence of mind to write things down, as my memory was shot and I knew that my relative calm was momentary.  That stunned feeling got me into a cab and got me home.  Once inside the door I half tore off my coat and finally collapsed, sobbing.  It was an ugly cry, a guttural cry.  Definitely a contorted 'wild horse face' cry.  I was completely oblivious to time and space and the pool of dirty, salty water that had melted off my boots and was currently soaking my pants.  I was alone and completely helpless and beyond any hope.  You hear people say things like "it felt like my heart was ripped out" and you think "really?", but this... this is pretty much as close to the truth as you can get.  Your chest aches, you can't breathe and you have that discombobulated feeling that you are teetering and about to fall, about to slip into unconsciousness or death.   The room was spinning to keep up with my racing thoughts. All the reassurance from the genetic counselor in September was pointless.

They were wrong.
My son was disabled.
He was less than perfect.
My son, my baby boy, might die at worst or be delayed at best.

Why?

Why why why why why?....

Why, when I had done everything right--when many people do drugs and all sorts of horrible things when pregnant then go on to have healthy babies--I have this happening to me?  I pulled myself up to the island and half-collapsed again and cried into a stack of bills and junk mail, all the while still clutching my keys. An indeterminable amount of time later, I stood up, hastily wiped away the tears and trails of snot and cleared my now sore throat.

I had phone calls to make. 

It's been a full year and I still tremble a bit when I think of that day.  That day was really Day 1 of my New Year.  Day one of My Year of Down syndrome.  In the subsequent weeks my panic would lessen as my knowledge grew.  As my understanding and acceptance grew.  As my network grew. As I ultimately got over myself.

During this time, I've done a few things.  I've created this blog and found a little bit of therapy and a whole lot of coping for myself.  I'd also like to think I've become a better writer in the process. If the emails and PM's and comments are to be believed, I've touched many.  When someone contacts you to say "I don't know anyone with Down syndrome and I don't have any kids and I found your blog by accident when looking for wine blogs... but I really like your stuff", I think you can say that you are doing something right.  With this blog is the Facebook page, the Twitter feed, Pinterest and the poor neglected YouTube channel.  Between all the social networking, the research, the kids and my full time job as a Mental Health RN, well, let's just say life is pretty full.

My personal support system has expanded as well.  During the course of the year, I've met up with (both in real life and virtually) parents of children with Down syndrome.  Now, my network stretches across the planet, from the UK and Ireland to California to South America and on to Australia and the South Pacific.  It is unbelievable, it is fantastic and so comforting to know that we are all united in this one thing.  Almost everyone has a story like mine;  they can remember the day they ''found out" in crystal clarity.  Sometimes it was ahead of time, more often than not, it was in the delivery room or in the NICU.  We all have different levels of understanding, our lives have taken many different paths and we all certainly don't see eye to eye.  But we all share this one this one thing.

We've seen a wave of inclusion in this time too, from home coming kings and queens to cheerleaders and swim teams.  The latest is a boy named Ryan, who appeared in an ad for Target.  We don't have Targets here yet (so I haven't seen the ad first hand), but they are on the way this year.  I look forward to supporting them in the future if they continue with such inclusive advertising, although, being Canada, we'll probably end up calling them "Tar-Jzay".

The biggest thing this year, no surprise, is the babies themselves.  Zoe, Wyatt's "typical" twin is bent on being Daredevil.  She is determined to make her own way as, unlike her brothers, she is an almost walking, almost talking marvel at 10 mos.  No one told her she was "6 weeks corrected", and I'm pretty sure she wouldn't listen if you did.  Wyatt has beaten quite a few odds himself, other than the 0.003% we were given as the chance he had DS in the first place.  His AVSD is quite balanced and has proven to have little or no effect on his development.  The boy that was supposed to be in congestive heart failure by one month and needing open heart surgery by 3-6 months has pushed off his surgery to 3-4 YEARS of age.  We have a cardiology appointment coming up this month and we will see if what I think (and hope) is actually happening:  that he has pushed his surgery date back even farther.  We work on his muscles daily and he sees the OT twice a month.  He has gone from a fearful unknown to a 4lb, 13oz baby with no muscle tone and an upside down ECG to a thriving 15lb (-ish) ten month old with sparkling eyes, a sense of humour and the ability to charm everyone around him.  He, himself, is the greatest accomplishment of this year.

We've all come a long way from my puddle on the kitchen floor.  Patience, time and education have gotten us all here;  these things will sustain us through the years to come.  We have learned to embrace all of our children for who they are, especially our twins that are so radically different.  I've even found a few moments here and there to regain my Zen.  What a year we have had. What a year a 'difference' makes. 

My Happy, Healthy Baby Boy<
Wyatt, 10 months old.

You Can't Always Get What You Want...

Last spring, we gave up trying for a baby. We had been working on this little project for over a year and we did not want our son Quinn to be an only child.  I was 38 and I felt that time was running out.  After all, the older you are, we thought, the greater the chances of having a baby with "problems".  We didn't want that,  so it had to be now.  As time went on we started saying things like "maybe we should go see somebody about this" and then we'd get busy and forget or I'd go back on nights and then whoosh!  Another month would go by. Then we'd look at each other again and say "we should really go see someone"... and so on.  Finally, in June we gave up.

Somewhere around then, Mother Nature looked over and said "You what?  I don't  f☠cking think so.  [Blam!] Twins!"

By July I knew I was pregnant and by the time Quinn started school I was perpetually green and frequently had my head hung over a toilet.  In the second week of September (at the twelve week mark) I knew something was "different" and I was dying to know what was going on in there.  I had the first part of my IPS screening on the Thursday, but by Monday's night shift I was really antsy.  Luckily, I'm a nurse who works in an ER and has friends who need to practice with the ultrasound machine.  After an unsuccessful attempt at the doppler (to hear the heartbeat... I just wanted to hear something) my friend advised me to come back later.  It was our little secret agent mission, Operation: Baby Peek. Meet you at oh-three-hundred.  Drink lots. Bring the machine. 

Thankfully, it was a very slow night.  My friend started expertly poking around with the ultrasound wand and then she found what she was looking for.

"Awww, there's the little nugget!" she said.

"Yeah... but what the hell is that?" I asked, pointing at the screen.

It was gone by the time I opened my mouth, but for a second there was the ghostly image of another baby, another sac, just beside the one she had found. Then it quickly faded back into the gloom.  We tried for 45 minutes to find it again.  Forty five minutes in the dark, poking and prodding and "Umph!"-ing and me saying things like "Ow!  Do you know what you are doing?" and some frantic button pushing on my friend's part.  Colleagues started poking their heads in as they noticed the lights were off, heard weird noises and wondered what the hell we were up to.  By the time we gave up, the room was pretty crowded and we still hadn't confirmed if there was a second baby or not.

My husband was noticeably silent the next morning on the phone and advised that we didn't know anything for sure and we should not worry about it until we did.  That period of logic induced calm ended Thursday morning after my tests. After blurting out "well, it's twins!",  I burst into tears.  We were both a little grey for a couple of days.  Two babies wasn't exactly what we had in mind. 

Earlier that year, in February to be exact, we had traded in our Saturn Ion for a sexy new red Equinox.  It had room, it had flash.  It was complete and total awesomesauce.  It also came with a pretty cool stereo, in which we popped a compilation CD of all our favourite tunes.  Quinn's taste in music is pretty eclectic sometimes, but he would always ask for  You Can't Always Get What You Want by The Rolling Stones.  Every car trip.  First it became annoying, then it became a joke, then it became a family song.  Quinn would entertain strangers with it in the grocery store and would sing it at daycare.  It would be sung at random and when we were looking for something around the house that we couldn't find.  It became a "thing", a touchstone for our little family of three.

When we found out that we were having twins, we switched into action mode.  Where is all our baby stuff?  Is our stuff good enough?  Do we have enough stuff?  All we had was "boy" stuff... what if we had a girl?  Girls?  It was a lot to think about.  It was also increasingly evident that our vehicle was inadequate.  There was no way that two baby seats and a booster could fit comfortably across the back seat.   We also needed storage space as twin strollers take up a LOT of room.  Much deliberation ensued.  Sean took me to the dealer lot one Saturday afternoon to show us a van that he was considering buying.  Not a mini-van.  A VAN.  As in holds 8 people and has room for everything that the kids own plus a small Shetland pony.  It was huge.  It was white.  It would hold all our stuff.  It was awful.  It was also the only vehicle that met our needs that we could afford.  So we bought it.  We held a contest on Facebook so that all our friends could help name the abomination on wheels that was eventually christened "The Whaaambulance"  (think three kids screaming down the highway).  It was dreadful.  It was also a couple of years old and the stereo wasn't as advanced as the one we'd just given up, so we couldn't have our CD sing along on the way home, sorry kiddo.  We turned on the radio to hear the angelic childrens chorus sing the opening of You Can't Always Get What You Want.  "You got that right!!" I grumbled as Sean swung the nose of our new white beast out into traffic while an enthusiastic little voice serenaded us from somewhere in the recesses of its body.

Having a baby with Down syndrome wasn't exactly what we planned either.  While we were waiting for our genetic counseling appointment in October, Sean and I talked at length about what the possibilities could be and what that would mean for our family.  He confided in me at the time that a delayed baby, such as one with Down syndrome was always his biggest fear.  To him, that seemed the worst case scenario.  I knew that wasn't the case... There are some pretty awful things that could happen out there.  However, I was pretty sure that I didn't want a baby with Down syndrome either.  We accepted the counselors odds all too quickly, all too easily;  one in three hundred.  We are just not that lucky, we told ourselves.  There is no way.

We certainly did not expect one of our babies, who by January had names and  personalities (at least in our minds) to have a hole in his heart.  We also did not expect them to arrive 6 weeks early, at 34 weeks and 4 days. I had discussed with friends prior to this that I feared prematurity and the idea of them being small and spending a lot of time in the NICU... which they both did:  Zoe for two weeks and Wyatt for a month.  So much unexpectedness in such a short amount of time.

I found a begrudging acceptance of the van the first couple of times we went grocery shopping.  That grew as time went on.  On our first road trip, I truly appreciated the amount of cargo space as we practically had to pack up the house to go away for a few days. 

Now that the twins are over six months old, they have really started to be fun.  Each has their own separate personality, set of likes and dislikes and methods for communicating and exploring the world around them.  They are fascinating to watch as they interact with one another and roll around on the floor.  Without sounding too clichéd (or like a gum commercial) they are truly double the pleasure.  Now that they are working on their first teeth, they are always looking for a ready chew toy.  Since they have learned that biting their own hand hurts, it's much more fun to nibble on your brother or sister.  It's a very interactive game; the down side is you may get hit or kicked  in the face.  You will also find them holding hands frequently and always orienting themselves by where the other is. If one loses track of the other for a period of time, there is hell to pay.  I can give example after example, but with twins you truly get to experience many beautiful things that having one baby simply does not provide.

Sleepy Kisses - 7 weeks old

We were sure that we did not want a baby with Down syndrome, but here he is.  In the time from his AVSD diagnosis in January to now, we have realized that this is not a "worse case scenario" at all.  We still have a long road ahead of us to be sure, but it is not as dark and foreboding as we once perceived it to be.  Every day he shows us something new, something unique to him that is so wonderful that it threatens to break my heart into a thousand pieces.  I'm not so sure things would be as noticeable if Zoe (his "typical" twin) was not here for contrast, but they are.  From the way he lifts his feet up to touch you in greeting, to the way he watches your mouth intently as you talk and tries to mimic the shapes you are making with it.  How he says "Ah-whoo!" when you enter the room as if to say "He-llo!" and only really cries when he bonks his head or gets very scared.  How his "bean bag" body snuggles perfectly into your arms and how extra fantastic it is every time he masters a new skill.  He is a wonderful little baby who will one day grow into a wonderful man.

I was in the middle of getting them dressed yesterday and was mulling over a few things when that song came on the radio.  You Can't Always Get What You Want.  I had to smile.  It is so true.  You can't and don't get everything in this life that you think you want.  When we were trying all those months ago, it was for one baby, not two and certainly not one with Down syndrome.  But here we are.  You can't always get what you want. Since last June we have been on a roller coaster ride, one that has necessitated a complete overhaul of our relationship, of our lives, of our finances, of our house, of our family.  We have had to learn to be more focused with our time and our energies.  We have made difficult choices.  We never would have asked for any of this.

What we've gotten in return is immeasurable.  What was unobtainable is now ridiculously easy.  What was troublesome is no longer an issue.  A view that was clouded by the past is now clear for the future.  You can't always get what you want. But, like the song says "if you try sometimes, you get what you need".

You really do.  We sure did. Our beautiful baby son showed us that.

Good Morning Wyatt - 6 mos

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.