Monday, March 2, 2015


Las Saturday afternoon Olivia asked me, "What is a syndrome?"

I pondered how to answer this in words my eight year old would understand.

I finally told her that a syndrome is a combination of symptoms that people had in common.

I know. What a stupid answer, huh? What can I say? She caught me off guard.

She followed up the first question with a second, “Do I have a syndrome?”

I knelt down beside her. “You do have a syndrome,” I told her. “You have 5p- syndrome. It means that when you were born you were tiny, you had trouble breathing and when you cried you sounded like a kitten.”

Her eyes got big, “I did?”

“Yep,” I hugged her and then meowed in her ear a few times, eliciting some giggles.

Tom stood off to the side, listening to our conversation. When Olivia skipped off to do whatever it is that she’d decided to do, he nodded at me, gave me a gentle smile and went about his business too.

It was a sweet exchange between Tom and me. We’ve never actually talked much about O’s syndrome. It’s just part of who she is. It’s not all she is but it is part of her. I think that him being there for so many of her early therapies helped him come to terms with her needs better than he would have if I’d been the one home for therapies while he worked.

Olivia hears everything we say these days and she’s obviously heard me mention things about syndromes. I’m not sure she realizes yet that she’s different from her peers but that time will come at some point and we’ll try and be ready. Right now, she’s just happy to play in the snow with her dad and her sister, to drink hot tea and play with sparkly things.

I know that there will be more conversations about syndromes in the future. I hope I manage them a little better than I did this one but maybe with as much calm and reassurance. Having a syndrome doesn’t define her. That’s what I want Olivia to know.

It doesn’t label her; it doesn’t limit her; it doesn’t make her less than anyone else in this world. It’s just a syndrome, just a combinations of symptoms that come together to make her a little more special than the rest of us.

Today she’s wearing a shirt that has sparkly letters spelling out, “I’M SO FANCY.”

Truer words were never ironed onto a tunic.

1 comment:

Julie said...

I posted on this on Share but I still love it and think you handled it just right. Parenting is a minefield. My brother John had a syndrome but he was just John.