About DWD

Hello and welcome to Down Wit Dat.

My name is Jen and I am the mother of three children; a boy and a set of boy/girl twins. One of my twins, my son Wyatt, was born with Down syndrome.

Our life here is a busy, happy adventure.  However, our lives were dramatically changed by the arrival of my twins.  We went from two working parents with one child to a family of five with a Stay-At-Home-Dad, seemingly overnight. 

But, I get ahead of myself...

In January of 2011, I found out that one of the twins that I was carrying had AVSD (Atrioventricular Septal Defect) and probably had a "chromosomal disorder".

At the time, my husband and I were devastated.  I am ashamed to say that now, but it is the truth.  We had never met anyone with Down syndrome, it was not part of our lives.  I am also a RN;  you think I would have known more.  As it turns out what I did know was outdated and really not relevant to how our lives were going to be. 

Earlier in the pregnancy, just after we had found out that we were expecting twins, we did our IPS screening;  one of the twins (Twin A, the boy) was flagged as a "potential for Down syndrome".  I believe the stats we were given were 1:300.  We went for genetic counseling and were told that due to my age (38 at the time) we had already beaten the odds as they should have been as high as 1:125.  We were told that they would not recommend amniocentesis (not that either my husband or I were keen on the idea as they would want to test both twins).  Although we would not know for sure until we were holding him in our arms, the risk was very low.  We were given much reassurance and sent home.

Until that day in January. 

We spent the next month, with my OB's help, searching for any clue as to whether or not our Wyatt had either Trisomy 13, 18 or 21.  We found nothing.  As my OB stated at the time, 50% of children with Down syndrome have normal ultrasounds.  So we waited.  And waited.  All the while hoping for the best while preparing for the "worst".

On February 16, 2011, at 34 weeks and 4 days, my water broke just before dinner.  In a mad scramble, we made our way to the hospital.  Less than 3 hours later, by Emergency C-section, I gave birth to Wyatt (4 lbs, 14 oz) and Zoe (4lbs, 1oz).

I knew even before the neo-natologist shuffled over what the verdict was. The team around my daughters incubator was lively and happy.  It was too quiet around Wyatt's incubator.

That is how I learned my son has Down syndrome.

The time after their birth was a blur.  In between all the feedings, diaper changes and doctors appointments I tried to network... I tried to find DS resources that meet our needs.  There are many parenting blogs out there and there are many DS related blogs as well.  Most "self-advocate" blogs seem to be written by the parents themselves and only bear the likeness of those they claim to represent.

I could not find one that met my needs.

In those early days, I craved facts.  Statistics. Real life accounts. In my "grieving" (which is what we were told we are doing--I have since found this to be very incorrect), I had a limited ability to process certain things.  I needed to find families with twins like mine.  I needed to connect to people who did not have another mission behind their words.  It was hard to sift through the scrapbooks of family life to find this tidbit here and that one there.  Many blogs seemed to be quite insular, only welcoming certain faiths, belief systems and agendas.  I wanted to know what our life was going to look like at 6 months, 1 year, 5 years, 15 years and so on.  No sugar coating.  No rainbows and unicorns and eternally sunshiny days.  No endless suffering either.

So, at the urging of my husband, I made this blog. 

I started out with the messages that I had posted to Facebook to update my family and friends about Wyatt and Zoe.  Things have, well, snowballed from there.

I write about our life.  I write medical articles.  I write about medical experience.  I write about advocacy.  I write about the history of Down syndrome and how we have to lay the groundwork for future generations.  You can see through the progression of this blog how I start out "grieving" and "spreading awareness" and eventually morph into the advocate (and web activist) that I am today.

This is not a "Mommy blog" other than this is a blog that happens to be written by a Mommy.  I don't tend to sugar coat much.  I call it how I see it, which can ruffle a few feathers. I like facts, best practice and empirical evidence. I am raising my son to advocate for himself... just like my other two kids.

I also like a drink now and again and swear like a pirate hooker.  I'm also (in no particular order) a feminist, a recovering ableist, pro-life, a LGBTQ ally, do not subscribe to any one particular faith, and am a proud Canadian.  If any of these things do not meet your needs, this is probably not the place for you.

Our little blog has now grown to include a Facebook page, a Facebook support group and a Twitter feed amongst other things.  I've also joined forces with a few other advocates in the creation of a activism page, Down Syndrome Uprising.   It has a blog here and is proving to be yet another exciting and enriching project.

I encourage a lively debate however I have no tolerance for bullying, antisocial or troll like behaviour. 

Acceptance.  Meaningful Inclusion.  Civil Rights. 

We are Down Wit Dat.