Emma Rose

Emma Rose, originally uploaded by kidsideup.

This is my little Emma Rose. I sometimes feel at a complete loss as to what to do with her. She's bright, too smart for her own good and has a great sense of humor for her age. She has moebius syndrome, an incredibly rare, possibly genetic, possibly not, condition that has affected her since birth.
As a parent I always worry that people won't see past that. That they won't take time to listen to her imperfect speech to know how smart she is. I worry because she's now in the pre-school program which goes straight into the special-ed program and I know what kids do to other kids.
Her only disability is that her face doesn't move the same as the rest of us. It affects her eyes which are always dry because she doesn't really blink. Her eyes move up and down but not from left to right. Her mouth doesn't close and may never without the help of one of her hands. Her tongue is a little misshapen and will affect her speech and ability to eat certain foods for the rest of her life. She has sensory integration issues which get better daily and I hope will go away completely. This makes bathing, teeth brushing, hair brushing and clothing an issue.
Most days, she's just my little Emma. After a meeting with her special-ed teachers or seeing pics of other children with the same syndrome it kind of hits me all over again.
She's a tough girl, She works us and manipulates her parents in ways we don't think her capable with her cunning little four-year-old skills and she's going to have a really great life. But as a parent, you can't help but wish to take it all away from her.
She's had two surgeries and will likely have more and I can't tell you how much I would have done anything to trade places with her. As a testament to her resiliency, they were both much less of a big deal to her than they were to me.
She's going to be fine, really, actually, she's going to be great. She'll be stronger than me, better than me and teach me more than I thought I had to learn.
I have to say that I love my little Emma Rose.