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

My husband and I were devastated.

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) we had already beaten the odds as they should have been as low 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 Down Syndrome children have normal ultrasounds.  So we waited.  And waited.  All the while hoping for the best while preparing for the worst.

On February 16, at 34 weeks and 4 days, my water broke just before dinner.  In a mad scramble, we made it to the hospital and 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.  It was too quiet around Wyatt's incubator.

Wyatt has Down Syndrome.

The time since their birth has been a blur.  In between all the feedings, diaper changes and doctors appointments I have tried to network... tried to find DS resources that meet our needs.  I may be a nurse, but this is far from my specialty.  There are many parenting blogs out there and there are many DS related blogs as well.

And, no offense, but a lot of them depress the hell out of me.

Many are scrapbooks of family life, a few have a fragment of useful information here and there.  There are twin stories, but of identical or fraternal twins where both children are affected.  Some are stories of families that adopt more DS children from around the world.  They are over the top positive and often mention what a gift from the creator this is.  Many of these blogs have book deals in the works.

This is not one of those blogs.

My name is Jen and I am the mother of a son with Trisomy 21 or Down Syndrome.  I am also the mother of twins.  I am not religious, I do not wish to adopt more children with his disorder, nor am I in denial.  I think this f☠cking sucks.  There, I said it.  (I also swear like a pirate hooker, which you will learn as time goes on).

This f☠cking sucks.

I love my little baby and his "normal" twin.  I also love their older brother, who is 5.   My children are my world.  I am however, a realist.  I like facts, best practice and empirical evidence.  My style of advocacy is not rosy and tranquil;  I am honest and will say f☠ck you more than thank you.  There are good days and there are bad days and I write about which ever is occurring at that moment.  I've been blogging for years and have decided to make a home here for my DS related entries and any other useful bits of information that I stumble across. As I mentioned before, I'm also a nurse, which makes it slightly easier for me to navigate through all the information that is out there. I have a little more access at times.  I would never say "do this or that" based on that fact;  what I find I will give to you... it is up to you what you do with the information.  My goal is to make the best life possible for my son (and the rest of my family) and if I share and educate a few along the way, then so be it.

I am a mother.  I am an advocate.

I may not be thrilled with it... but I am accepting and I love my son.

I am Down wit dat.

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Tags: 21, Down, Syndrome, Trisomy, advocacy, delay, developmental, needs, parenting, special

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