Williams Syndrome Wednesday: Not Ok Holiday

I took a little blogging holiday over the holidays. There was a lot to process and I couldn’t quite bring myself to form my thoughts and feelings into words.

First, I found myself reliving my delivery and NICU experience as we celebrated Obi’s first birthday, only now I was able to apply the Williams Syndrome lens to what happened. This made me feel the need to go back over every painful moment to see if knowing about the WS might somehow change how I felt at the time or the decisions we made. Those were dark days, and reliving them was no better. I don’t know what difference it would have made, other than giving me something else to worry about.

Then there was Christmas. For me, the holidays are steeped in tradition. From the cookies I bake to the ornaments I hang on the tree to what we eat at meals, tradition rules the days. I was reminded time and again as I went through the rituals, that sweet Obi may never follow in those footsteps. She may not be able to make cookies on her own or whip up a turkey dinner. She may not be shopping for gifts – reveling in the thrill of the hunt – designing wrapping schemes and sneaking around.

She won’t have kids of her own. She won’t be Santa. She won’t have a home of her own to put up a tree and hang the ornaments that my grandmother gave to me.

I totally get that lots of people don’t have these things. Many of my favourite people don’t have kids by choice or by circumstance. Some people just don’t like to bake, can’t cook, hate Christmas, marry into another faith and choose not to celebrate. There are no guarantees. But knowing already. Knowing now that it may not be up to her…that these thing may simply be out of reach for her, well it nearly broke my heart in two.

We had a wonderful Christmas. The company was fabulous. The food was fantastic. The boy was filled with glee. Santa was generous.

Even so, it was a hard time. It’s been a hard year. There’s no way to know if next year will be better or worse. I know so much more than I did sitting in the NICU trying to get a 3 3/4 lb baby to eat. But in knowing I have learned how little I know.

Sigh. I’m hoping for a better year.

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