October 21st- Zoe and Katie

“Zoe was a surprise right from the beginning.  When asked if we wanted prenatal testing, we declined.  We wanted this baby, besides nothing would happen to my baby, those kinds of things happen to other people.  When Zoe arrived Mark announced, ‘It’s a girl!’ The doctor swaddled her and handed her to me.  I looked over to my mom and said, ‘Mom, look at her eyes…’

My brother is her pediatrician, and he was the one to tell us the news that he suspected that Zoe had Down syndrome.  We didn’t know anything about Down syndrome except what we had seen on television, you know Corky on Life Goes On, or Becky on Glee.  He let us know that there was a chance that Zoe had Down syndrome and he needed to do some tests.  It would take 3 days to receive the results of what my brother already  knew.  Zoe has several of the classic markers for Trisomy 21.  She has the almond shaped eyes, small ears & nose, Palmer crease and sandal toe.  We didn’t know that all babies were not whisked away for “testing”, so we kept the news of the possible diagnosis to ourselves, why tell anyone something that we didn’t know for sure?  The visitors started to arrive to congratulate us and welcome the new edition to our family.  When they arrived, Zoe was not there.  We didn’t know this wasn’t the norm, but I remember my sister-in-law asking, ‘Where is the baby?  Why isn’t she here, what do you mean testing, what are they testing her for?’  It was then that a nurse walked into the room full of our family and started handing us pamphlets about Down syndrome.  I remember being so upset, we wanted to tell our family ourselves, not have them find out from the nurse handing us literature!  I think back now that this reaction was probably my denial of what I knew to be true.  We started researching about Down syndrome on our phones.  BAD MISTAKE!  I was horrified to see that life expectancy for someone with Down syndrome was 25 years old!  I couldn’t imagine that there was a possibility that I would outlive my daughter!  I must have been l0oking at an old article, because due to new medical advances life expectancy is now in the 70s.  I stopped using Google as my source of information, and started to get to know my baby.

Zoe was our first baby, and for that I am extremely grateful.  Everything was brand new, so Down syndrome was secondary to us.  We were getting used to having a baby, period.  A baby we had both wanted so badly.  We didn’t know about “milestones” and “supposed to be’s…” and enjoyed our baby.  At the beginning it was easy to treat her like any other baby- we were lucky that Zoe did not have any major complications.  That isn’t to say that we haven’t had our scares, but for the most part we enjoyed showing her off and bringing her everywhere with us.  She was such a good natured baby.

As Zoe began to grow it was getting harder and harder not to see the differences between Zoe and her typical peers.  I felt a strong need to find my “tribe”.  It was then that I walked into GiGi’s Playhouse for the first time.  It was SCARY- walking in meant facing the diagnosis head on, and also sneaking a peek at what our future may look like.  Would there be children with Down syndrome there?  Would there be adults with Down syndrome there?  We were used to taking things a day at a time, but to think about IEP’s, school placement, career readiness skills etc. all seemed so far away and so REAL.  I believe the first program we went to was LMNOP.  I remember thinking this felt just like any other program I would expect to see at a park district etc.  There were moms holding babies- all in a circle signing songs, bouncing babies on their knees, and laughing.  We sat down and took our place and I met my first parent.  She had a son about the same age as Zoe and she told me about an facebook group that I could join.  It was all so welcoming.  We left the program and were excited to come back.  It was a while before we did, you know life gets in the way, but we never forgot about GiGi’s Playhouse.

Fast forward 2 years and we are moving to Oswego for me to become a stay-at-home mom with our 2nd child.  Zoe is now 3 and entering school.  We were so excited to see that we had a GiGi’s Playhouse nearby!!!  We became much more regular to Playhouse programs and I really found my “tribe”.  I started to volunteer and get to know the other families, and we continued coming to programs.  It wasn’t always easy.  There were times when I would skip Aidan’s nap so Zoe could come to tutoring and she would spend about 5 minutes working and the rest of the time flicking the light switch on and off and I would think to myself, ‘What are we doing here?  Is she getting anything out of this?’  But we continued coming- partly because it was FREE, and partly because there were days as a stay-at-home mom when the only adult I would talk to for hours was Zoe’s bus driver!  We kept going, and going, and low and behold I started to see changes- she was able to sit for longer periods of time to attend to the lessons, she started identifying more objects and growing her vocabulary, and I about fell over when I saw her reading her first Reading A-Z book at the age of 4.  And now she is 7, we are in the midst of IEPs, school placement and all those things that had seemed so far away.

Has it always been easy, NO, but I am so appreciative of all the lessons that Zoe has taught me.  She has taught me to slow down and realize what is truly important.  She has taught me that I want to be the type of person that looks at what is, instead of what isn’t.  She has taught me about unconditional love, not just love when it is easy.  GiGi’s Playhouse has taught me the same.  The people I have met and the programs we have attended have all been about celebrating our daughter and her accomplishments.  Praising the growth that she is making, instead of focusing on what she hasn’t.  It reminds me of a favorite poem from Shel Silverstein: