Monday, June 17, 2013

Ma - I very small...

We try to be very open about Maddy's dwarfism in our family. I've heard stories of kids with dwarfism starting school and not even realising until then that there is something "different" about them, and then it comes as a huge shock to them when they are told "Oh by the way, you have dwarfism!" I don't want that, I want Maddy to always know (in an age appropriate way) that she has dwarfism and that's ok. As a result, we talk about dwarfism at home. Usually to Lana, since she is older and asks more questions and makes more comments. She understands that Maddy is small because she has dwarfism, and that she will never grow as tall as most adults. She also thinks at times that when she was a baby and was small, that she must also have had dwarfism but she's grown out of it now. It's a process, but I want for there to always be that dialogue there. 

Maddy is often mistaken for a "baby". People ask me all the time whether she is 6 months old, or 9 months old... they try to guess her age and are way off. The fact is, at first glance she does look that young. Her hair isn't even very long yet and she's the height of a 6 month old so it's a natural mistake. She is in fact very much an almost-three-year-old, walking and talking, getting into mischief, being cheeky and silly, singing little songs... She both acts and thinks like any other nearly-three year old. I often explain to people "She's not a baby, she's just very small", or "She's not a baby, she just looks a lot younger than she is". At this stage, I think that's the best explanation. Particularly being in Hong Kong, most people (particularly non-Native English speakers) have no idea what you're talking about if you mention dwarfism. 

For ages, if you asked Maddy if she was a baby, she would say "Yes! I'm a baby!" and giggle. I think she liked being the baby, and maybe was called "baby" so often that she thought it was true. Recently though, she's been telling strangers "I'm not a baby!" and rightly so - she's not! 

The other night, I was heading to bed and I heard Maddy was still awake. Since she's still in a cot, she can't sneak into our room in the middle of the night like Lana would at that age. I thought it'd be nice to smuggle her in for some cuddles. As we were laying there, staring into each others eyes and every now and then grinning and giggling like schoolgirls staying up after curfew, out of no-where, Maddy said to me "Ma, I very small".

I was taken aback at first, and said "Yes Maddy, you are". It's the first time she has commented on her size by herself. I'm sure she's heard it a bunch of times. I still don't know how aware of this she really is, but I figure it's baby steps. 

She is very small, and that's ok.