But nothing prepared me for life with a child with special needs.
Why? Because I never knew what it felt like to wonder if my child would ever be able to communicate with me. It was always a given that my child would be able to tell me if they were sad, happy, if they got hurt, if they were tired, if they were hungry, if they had a sore throat, a bad dream, what made them laugh...I just knew that at some point language would kick in.
Because language connects. It lets us into our children's world. And those first months of Lily's life I was so worried that I couldn't get to that world. Someone had told me right after Lily was born that most people with Down syndrome don't talk. And that little piece of false information stuck with me. Even when I began to make connections with parents of children with Down syndrome and learned that speech does eventually come for most children, albeit later than "typical" children, that worry lodged itself in my brain, like a vicious weed that refused to be uprooted.
We're two and a half years into this journey called Down syndrome and the one thing I've learned? Lily will prove me wrong again and again. She will out-do my expectations and then some. No matter how high I set the bar, she sets it higher.
Sam and I were sitting in our sunroom last night, in the cool of the evening when a beautiful summer's night breeze was blowing through the screened windows. Lily was coming in and out of the room, doing what she does best- entertaining us. She sang songs, she danced, she played peek-a-boo, she tickled our toes, she brought her baby in and rocked her, she threw her baby on the floor and shook her finger at it and yelled at it, and then burst out laughing at our responses. She fully engaged us with her antics - she was the star, and she knew it. And the whole time she didn't utter one word. She babbled, she sang her constant refrain - lalalalalalala- with an occasional sign thrown in...daddy or baby or milk...but she was communicating with us, just as clearly as any of my two and a half year olds has done in the past.
We were connected.
I do believe speech is coming for Lily. It might be this year or it might be a few years from now, but my girl is showing me every day that she's thinking, she's problem-solving, she's engaged, she's connected to us. For the most part that comes through sign language- she has well over 100 words she uses to communicate. Every now and then she slips in a spoken word- "baba" for milk or "oooh" for cheerios. But for the most part she tells me what she wants through gestures and signs, and I'm learning that there is more to language than "speech".
Take for example this video. It is priceless to me. I watched it three times before I realized- she's telling me that her baby is sleeping. I was so caught up in listening to Lily's sweet little song, that I almost missed her word- sleep. (and for those readers not familiar with American Sign Language, the sign for "sleep" is the sweeping motion she is making across her face at the end of the video.)
"It is only with the heart that one can see rightly. What is essential is invisible to the eye." ~ Antoine de Saint-Exupéry, The Little Prince