Williams Syndrome Wednesday (Friday Edition): Running Between the Raindrops

Sometimes, when I get asked too many questions or read too many Williams Syndrome sites online, I start feeling overwhelmed by all the ‘what if’s’ and ‘could have’s’ and the unknown. What lies ahead feels like ‘too much’ when confronted with all the possible things that could be an issue as time passes.

I find, at these times, I cope by trying to focus on one little baby thing that Obi is doing that seems like a regular baby thing. I listen to a gurgle. I coax a smile. I watch her pass a toy. I try to forget how late these small moments are compared to typical babies, how few gurgles and smiles I get, how slowly the toy moves. I remove expectations from the equation.

I make myself let it all go and I really really do enjoy the moment.

I’m so grateful for these little flashes. They are so precious to me, more than they were with the boy. With him, I remember the milestones. Smiles, rolling, teeth, sitting, pulling up etc. Each of these ushered in a new phase for him, and for me – new toys, new games, new challenges. New triumphs.

No, for her it’s the quiet ‘nothing’ moments I love. They are boring. Everyday. Typical. They run between the raindrops of her WS. Almost like a barely visible thread that knits all the parts of her that aren’t her diagnosis into a beautiful reminder that she is so much more. And that I, as a parent need to be more than a ‘special needs parent’ and that the world needs to know her as more than a WS child.

Right now, it’s easy. But I’m beginning to understand it will be my job, no matter how the syndrome manifests, to make sure the world continues to see her that way.

 

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