I’m not sure I always know what to do when Williams Syndrome shows itself clearly in our every day life. It’s a strange combination of pride an anxiety that well up as I watch Emmy interact with the world. There was a day last Spring that I go back to often…it seemed to mark a truth about the future that made me pause. We went to Ava’s classroom for their annual poetry reading day. Piper, Emmy and I went to see big sister share her work. We came with many other proud parents, each eager to hear what their child had created. As we sat down in miniature chairs, Emmy caught the eye of the Dad next to us. He smiled at her and that was all she needed…
“Hi!”
…”Well, Hi there! Aren’t you cute! How are you?”
Smiling, staring, locked in on his eyes, Emmy again said, “Hi!”.
…”Hi! You’re not shy are you?” “She’s too cute, Mom.”
I thanked him and introduced myself, all the while Emmy continued to stare at him.
“Hi!”
…he only smiled this time, then looked straight ahead. The kids were about to start reading…
“Hi!”
I “shhhh’d” quietly in Emmy’s ear, getting out a toy from my bag to try and deter her now unceasing gaze at this gentleman. A single shake of her toy and she tossed it aside, much preferring the attention of her new friend.
“Hiiiiii….” She said again, verbally begging to get just one more interaction.
He waved and whispered a polite “Hi” in response and I knew at this point, it was probably best that we change seats.
I wasn’t embarrassed, just trying to be conscientious…acknowledging the fact that beginning now, we have to teach Emmy the social graces of our world. And I feel like that is the line we will walk often….the line between believing that Emmy is capable of doing anything she wants and at the same time accepting that she has Williams Syndrome. It makes her different. Pleasantly different. But different. She’ll know it one day. Because she’s smart. And science shows us that her mind does and will in fact, work differently than ours. Her emotions and attachments to others are unique to those with WS. I think giving her boundaries in her interactions now will ultimately help her succeed in her life and relationships. It’s a curious journey we are on and there are only snippets of instruction for what to do. But honestly, how can you resist her smile and her light?
Next month she turns two. She’s getting older and she’s not the baby she once was and seemed to be a little longer than the other kids. I still feel unequipped and unprepared. I still don’t understand why this is our path, but all I can do is take it one day, one situation at a time, keep breathing, keep seeing, and as Pete’s Nana has always reminded me, “keep my chin up”. All it takes is one smile, one look from her and it all seems doable. So amazingly doable. Like maybe we even lucked out if luck was real. But I don’t believe in luck-I believe all of this is on purpose.
Dear Emmy 