Monday, March 17, 2014


Sadie with a pregnant mommy
When I was about 19 weeks pregnant, just moments after the shock wore off from discovering I was having a girl (when I was 99% sure it was a boy, so much for that mother’s intuition), I learned that our baby would probably have Down syndrome and for sure would have a significant heart defect.  Our initial reaction was of course one of complete and utter shock.  My heart ached and my eyes filled with tears as we grappled with the thought that our baby might not even make it to birth.  And if she did, would she survive?  Would she be able to live a healthy, active life or would she be a sickly child we would have to sit by and watch slowly die.  These and many other thoughts filled our hearts and minds as we held onto each other and cried.  And feared. . . and hoped. 

After my mom escorted my son out of the room, my husband and I were left alone with our thoughts.  Decisions had to be made.  Did we WANT to know if she had Down syndrome?  Or maybe some other more life threatening disorder.  We were already wondering if she was going to live and Down syndrome was the LEAST of our worries.  But we were worried there were other more predominant issues to deal with and worried there might be something that could put my life at risk.  So after great deliberation we went with an amnio. . . just so we would “know”.
We spent the next few days wondering if our baby would survive to be born. . . live to see subsequent birthdays.  At this point we just wanted to hear our baby would live.  The baby we had grown to love already.  We just wanted her to LIVE.  Once we finally got into the see the cardiac specialists it was clear that our sweet baby WOULD live and likely thrive, after one, maybe two open heart surgeries.  With rough hand drawings and stories of great strides in medicine our greatest fears of death were alleviated.  We were elated.  But now we were faced with the reality that although she would likely live a healthy life, she DID have a significant heart defect that would require major open heart surgery and she DID have Down syndrome.
Drawing of a "normal heart"
A heart with AVSD - Chloe's condition

My heart once again ACHED as I wondered what all that would mean.  Especially the Down syndrome.  What would she be like???  What would she LOOK like???  Would her mouth droop?  Would her tongue hang out?  Would she talk “right”?  Would people stare?  Doubts, fears, anxiety all filled my mind.  All the many questions that swirled through my head overwhelmed me.  I remember feeling as if someone had picked up my house and shook it upside down and around and around and left me, sitting there alone, in the middle of it all. 

My dreams for her were gone.  She wouldn’t be “normal” so what could I dream for her anyway.  And slowly, ever so slowly, I began to realize that first off, she would be alive.  That was our first dream.  Then it became ever so evident to me that although she WOULD be different in some ways, so are all kids.  It’s really the fact that she is so ALIKE a group of people who all have Down syndrome, not that she is so different.  And then came some serious self reflection. . . what WERE my dreams for my kids anyway?  Fame?  Fortune?  Great success?  Um, those that know me know those aren’t MY dreams.  My dreams are for happiness.  Real, pure happiness in whatever that means for each individual.  To be a good friend, a good citizen and to care for others.  So what about those dreams couldn’t be true for our new baby who just happens to have Down syndrome and a heart condition?  You got it. . . NOTHING.

Don’t get me wrong.  As I’ve said before this is a process.  A loss, of sorts, that we must grieve.  But once your realize that your child is still YOUR child and will have incredible dreams of their own, because yes, they are in fact individuals!  And the greatest dream we can have is for happiness, not defined by us, or others, but by the person who experiences it.  
And by the way, yes people stare sometimes, yes her mouth droops and yes, her tongue sticks out, but I think she's beautiful and worth it.  Her imperfections make her who she is!

1 comment:

  1. Aww, that's how we found out too - heart first, THEN Ds. Puts it all in perspective, doesn't it? I've always been grateful for that gift of timing.