“Normal” is a funny word. You might think it means one thing – such as the dictionary definition, which is, according to Dictionary.com, “conforming to the standard or the common type; usual; not abnormal; regular; natural” – but that idea can change. The first three definitions there do not describe Namine in the least. Of course there is no one like her. Caudal regression alone only occurs in one out of 25,000 live births, to say nothing of the Pierre Robin sequence or her heart defect.

Doctors ascribed to her the term “femoral facial syndrome” in an attempt to better understand her unique physiology. That alone is testament to her uniqueness, her dissimilarity to her peers. But those last two definitions – “regular; natural” – strike a particular tone for me. I have often made the observation that “normal” is just what we’re used to. Normal children’s legs, for example, look strange to me. I suspect they always will.

Yesterday Namine was playing with her kitchen set. She had originally wanted to have a tea party, but by the time I had made and cooled the tea, she wanted nothing to do with it. “Not now, Haha. I’m making dinner for you guys.” She put some plastic eggs in a pan on the stove and a plastic loaf of broad in her little oven. She even asked for a small towel to drape over the oven handle. These are all things that we do, all normal things. She defines normal based on us, and not – at least not yet – on her peers. But she reminded me, also, that she is perhaps a little too smart for her own good.

As I was getting her ready for bed last night, Namine asked me, “What happened to me?” I asked her what she meant, but she didn’t answer. She just sighed, as she does when I suspect she knows what she means, but she simply doesn’t have the vocabulary to express it. So I told her, “Nothing happened to you. God made you exactly as you should be, and you are perfect just the way you are.” She smiled back at me and said, “I love you, Haha. I need a hug!” Of course, I was happy to provide.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.