Wednesday, January 11, 2012

The Tears of Down Syndrome

Almost two years ago, when I was about 13 weeks pregnant, we found out that our second son, Joey, had Down syndrome.  At the time, Down syndrome was the least of our worries.  At only 13 weeks, a septated cystic hygroma (significant pooling of fluid and white blood cells) surrounding Joey's head and neck showed up on an ultrasound.  At this time, we were also notified that Joey had hydrops-- excessive fluid all around both his body and his heart. You can see the white line of fluid almost like a halo that goes from the top of his little head all the way to his feet.  There were tears.

We were also told there was fluid around his little heart.  We were warned that our precious son probably had less than a 2% chance of survival and less than a 1% chance of being "normal" (whatever normal is--still not sure--certainly not me!).   We were advised to have a CVS test where they insert a long needle up into the womb and take a tissue sample.  Our OBGYN told us not to look at the CVS as a "termination" test because we were hesitant to have the test.  He told us instead to think of it as a means of gathering facts so we can be ready to provide whatever health care we needed to for our precious son.  There were more tears.

Three days later we learned over the telephone (we had gotten the CVS done a few hours away) that our baby had Down syndrome.  There were many, many, many more tears.  Tears of grief and tears of worry.  Mostly tears related to our fears of the unknown.  Would our son survive?  Would he ever read?  Would he ever talk?  Would he ever ride a bike?  Drive a car?  Go to school?  Have friends?  Have a girlfriend?  Get married?  Have a job?  The questions and worries were as endless as the tears.  

It was a long pregnancy.  So many unknowns.  So many fears.  Trying to offer it all up to God and let our need for control go.  So many tears.  Getting used to the idea that our baby had Down syndrome.  Getting used to saying it out loud.  Getting used to telling people our son had Down syndrome.  I still remember the fear and ultimately the relief I felt after telling one of my best friend's that Joey had Down syndrome.  It was a non-issue to her.  Those are the kinds of friends that you cling to.   

Those are all the first kinds of Tears of Down Syndrome.

There are others that come along the way.  Tears after his nystagmus was diagnosed.  Tears after we learned he needed a helmet.  Tears before, during and after his heart surgery.   Tears when his thyroid levels were off. Tears when he had RSV.

Those kinds of tears follow all children.  It's part of being a mom.  

The best kinds of Tears of Down Syndrome are the ones we are experiencing now....

Tears of joy.  Tears of excitement.  Tears of pride.  Tears of wonder.  Tears of awe.

Just last week during our Help Me Joe (aka Help Me Grow) visit, Joey decided to start Army crawling.  And not just with his arms, but with his legs and arms moving in unison bilaterally.  Right arm/left leg.  Left arm/right leg.  And we cried.  And those were the sweetest tears to taste.  Pure joy.  Pure goodness.  This little wonder has worked so hard and overcomes every obstacle.  

Tonight he did it again.  He signed his first word "more".  More tears.  We have been working on "more" for 16 months now.  He has consistently been saying Da Da when he sees my husband, but "more" was a hard fought battle (Ma Ma is proving to be the most difficult word of all...).  The most amazing part of it was that he did it unsolicited.  I guess that's what kids do.  You try to immerse them and bombard them with words and lessons, but it's not until you let them take a breather, drink it in, figure it out, that they are able to show you that they know exactly what you meant.

Joey--the Tears of Down Syndrome are incredible.  They are like diamonds.  You work so hard for all that you do and your victories are that much sweeter because of it.  Thank you for helping us to appreciate every little victory along the way.  Please forgive us for ever thinking that your life or existence might somehow be a burden.  That you might not be accepted.  Please forgive our ignorance and thank you for showing us the light.   Thank you for starting our mornings off with your joyous smile and ending our days with your sweet kisses.  Being your parents is a privilege that we are blessed with.  We are so proud of you.

Photos (other than ultrasound shots) are all by Nat at


  1. Way to go Joey! Beautifully written!

  2. Such a sweet post. I love the honesty. Such beautiful life lessons. You are a lucky family.

  3. oh, and Joey has an awesome head of hair on 'em!

  4. More tears... the tears your friends shed when they read your blog which is so beautifully written and so absolutely true. You make my world better. Thank you.

  5. Beautifully written post. Go Joey go!!!


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