I think she has Down syndrome...

October is Down syndrome Awareness month and I wanted to share one of the first things I read in the hospital shortly after Lily was born. I remember sobbing the first time I read "Welcome to Holland." The poem was included in our "Welcome to Down syndrome" party bag.  We were already in "Holland" unbeknownst to us with the diagnosis of our twin sons with autism 4 years prior to Lily's birth.   

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Even though the memory of those first days after her birth is bittersweet 8 years later, I will never forget the crushing devastation I felt the moment I heard Matt say "I think she has Down syndrome" moments after her birth.  We'd had a few hints during the pregnancy, but never confirmation. Due to my high risk for preterm labor we declined to do amniocentesis. Even with hints there really is no way to prepare or shield yourself from the onslaught of shock, despair, fear, anger and disappointment coursing through you, whether you find out prenatally or after the birth of your child.  It's hard for me to think back to Lily's birth let alone write about what I felt that first day.  When they handed Lily to me swaddled in a blanket in the recovery room for the first time, all I could see and think when I looked at her was Down syndrome, so I quickly handed her off to Matt.  I was beyond angry and I directed that anger at God in my head.  I demanded "Why God, why us?" I remember ranting at Him asking Him why didn't He just give us another child with autism since we were already knee deep in autism.  I didn't want to learn about Down syndrome.  I kept thinking what had we done to deserve this?   

Several hours later after being moved from the recovery room (I had a c-section) to my hospital room, I was lying in the bed facing away from my mom, Matt & Lily (who we hadn't even named yet) crying.  I still couldn't bear to look at her and was avoiding holding her.  I don't remember what happened, but my mom shared this story:  Matt walked over to the side of the bed I was facing carrying Lily. He then leaned down and quietly said to me "Liz, look at her. Look how beautiful is.  I already love her so much".  He then placed her in front of me on the bed, even though I resisted at first.  As I laid there staring at her tiny face with it's tiny features, I can recall feeling a sense of calmness wash over me. It was surreal. I believe in those moments, I fell in love my daughter.  I finally started seeing Lily.  How could I have anger about someone so innocent and helpless. She needed me so much and the funny thing was that I needed her too. As the days and weeks went by, Lily whittled away my bitterness every time I held and nursed her. She soothed my anger and disappointment with her gentle smiles and sweet little moon eyes. She silenced that voice in my head that kept repeating "Why me?!" when she snuggled next to me in bed. She helped me find peace by just being herself, Down syndrome and all.
   
I know it's hard for some to understand or even believe me when I say I wouldn't change Lily. Having an extra chromosome makes Lily who she is and we adore her. Obviously, it isn't always easy. There are even days that I could swear her soul sister is Helen Keller (think before Anne Sullivan entered her life) BUT, I can also say (and with some authority since I have 2 sporting that extra chromosome), they are living proof of angels on earth. Lily didn't ruin our lives, she enriched it and I now thank God everyday for blessing us with such a beautiful spirit.