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!

Friday, March 14, 2014

Celebrating World Down Syndrome Day 2014

First off I HAVE to share this video with everyone who knows Chloe or knows OF Chloe.  It made me cry and I think it’s amazing!

So this blog post will be dedicated to Chloe and her biggest cheerleaders Xander and Sadie, in honor of WDSD which takes place on March 21st every year.  Get it???? 3/21. . . . wait for it. . .  Trisomy 21 the official medical term for Down syndrome.  I know, cute right?  Anyway, let’s talk kids.  Mine, of course, cause it’s my blog (hee hee).  I haven’t done a general update in awhile so here goes:

CHLOE has been a busy little beaver.  Which in turn means so have the rest of us!  But what else is new!  I was shocked at my most recent teacher meeting when she showed me the book Chloe was reading.  Yes, I said it R-E-A-D-I-N-G!  Not “reading” like I thought, where she points her fingers at words and talks along in gibberish as she goes, but actual word recognition reading!  wooo hooooo!  Now that’s a milestone I wasn’t even quite expecting yet.  What a pleasant surprise.  She’s also talking in FULL, sometimes long sentences!  Not always, but every now and then she comes out with a wowzer!  Like “Mom, can you stop doing that?!”  (probably when I’m singing or dancing).  She’s got a new i-Pad that we’ll be using to help her communicate because although she can speak in full sentences at times, at other times the words just escape her and frustration bleeds into her sweet little eyes.    Chloe’s also toilet training and has been for what seems like months!  She’s so darn close.  Close, but yet so far. . .  Chloe loves to sing and dance with Sadie, play floor hockey with Xander, watch movies and act them out, play with her Playmobil people and her cars.  She is full of spunk and zest, but a full on love.  I find if I’m getting frustrated with her if I can get her to laugh, we’ll all be okay!  Lastly, she’s been busy doing gymnastics (or should I say Max her shadow has been busy chasing her during gymnastics!)  I think that covers Chloe in a nut shell.  Oh, I forgot the medical update. . . we’re trying to wean her off her thyroid meds and heart meds and could potentially have her MED FREE by the end of April.  I get VERY emotional when I think about this as it seem like the end of a very medically dominated era.  I’ll keep y’all posted.

AND as if all this isn’t enough, Chloe has taken to RUNNING out of the house.  We’ve gone into lock down, but mistakes happen and she has gotten out and gone missing, although only briefly, several times.  One time she was seen bolting out into our busy street without even glancing for cars or hesitating.  We were sooooo lucky!!!!  We will be putting this in the forefront now that the warm weather is returning and will be working with our local police department to get her hooked up with Project Lifesaver, a tracking program for people with disabilities.  We’re also working with the Department of Disability Services and the school to come up with some behavior plans to help prevent bolting.  It’s a very scary prospect!

SADIE SADIE SADIE.  What can one say about Sadie.  The poor middle child, sandwiched between two very high maintenance siblings.  And a drama queen in her own right.  Well, she’s been struggling a little with her place and has expressed the feelings of being left out so we’ve made a real effort to give her some special extra attention, her school is hooking her up with a mentor and I’m enrolling her in a program called SibShops, just for siblings of kids with disabilities.  She’s looking forward to both!  She’s also taking gymnastics with Chloe, doing well in school and growing like a weed!  She LOVES to play school, experiment, dance and be silly and do “fashion”.  I fear the day when we can fit in the same clothes!  Although I guess that means I get to steal from her closet too ;)  Sadie’s had two bouts of strep but otherwise is healthy.  No specialists for her.  She is such a great sister to both Chloe and Xander. 

XANDER MAN!  Last but not least.  He’s 13.  Yes, 5 years from 18. . . 3 years from being able to drive.  1 ½ years from high school.  And I know all this because he’s been sure to point it out to me!  He loves toying with me and reminding me he is growing up!  AND  UP AND UP.  Every week he likes to point out how far above my head he’s gotten.  Last count 5’5” and growing.  He’s a beanpole though.  95lbs soaking wet.  He’s definitely working to find himself out, but he, like his other sibs, is a strong part of the family.  He’s working VERY hard in school and hockey and LOVES playing video games.  He’s still interested in medicine (has been since he was 2), but also takes some interest in the military.  He’s a family guy for sure, heading down to VA to visit his Great Nana who he loves very much.

Stacey and I are doing well.  22 years together and 19 years married.  wowzers!  And still going strong.  He’s gearing up for the spring season at work and I’m about to take on an increased caseload at my job (hence the early WDSD post).  We’re ready for spring for sure!  It’s been a LONG and stressful winter.