Williams Syndrome

Williams Syndrome Wednesday: My 1 year old has Williams Syndrome

It’s crazy to say it – but Obi will be one on Sunday.

Mommydo WS First Birthday

We had a party which was well attended…an experience that really drove home my worry that it may not always be this way. There may be years when no one wants to come to her birthday party and that makes be cry a little each time the thought crosses my mind.

I certainly took a few minutes to have a pity party of my own. I looked back at the photos of my son’s first birthday party. Where he was developmentally, where I was ‘parentally’… it was all so different. I remember him climbing the stairs for the first time that day, pulling to standing at his gifts. Holding up 1 finger as I taught him to when someone asked how old he was.

Obi was lovely at the party – smiling at all the guests and generally being her best self. She sits well, though can’t move from sitting or into sitting on her own. She now makes 1 consonant sound, and will look up when you say her name (at least some of the time).

It’s really hard not to compare, especially at memorable times when the differences between my typical child and my WS child at the same age are crystal clear. It makes me sad for what has not come to pass, and anxious about all that I’ve yet to learn.

I would be super down in the dumps except, as always, there are positives too, steps forward that won’t catapult us into a ‘typical’ time frame, but that show hard fought progress.

The first? She has started using her first SIGN LANGUAGE sign. She signs MILK. Every time I see it I’m amazed. Though her speech and language skills are quite delayed, little Miss is communicating with me. This pops my pity bubble every time it happens, as though that tiny squeezing hand is trying to pump all the sadness out of me and replace it with pride. According to the instructor, the average time kids start to use signs to communicate is 13 mos. Eeeeek!

The second thing is she has started to eat. She has taken to solids with gusto. It’s messy and marvelous to watch. It’s a HUGE relief to see her eating baby cereal and fruit and veg and yougurt. So, so good.

The good, the bad, the ups, the downs. It’s been quite a year. I wonder what next year will bring?