Sunday, July 22, 2007

Emma's Eight

Emma's eight, today. She was born on a Wednesday morning, just after midnight, yanked out of her Mother's womb foot-first, held up in the air for just a moment. The surgical assistants mumbled amongst themselves, pointed out the large gap between her toes to each other knowingly, and whisked her off to the NICU. A lot has happened, since then. Not so much to Emma, but to most of those who have met her.
It's difficult to describe, because it's difficult to describe. The adjectives don't do the truth justice; they tend to spin one off into a minefield of platitudes and prejudice. Saying that Emma has "special needs" implies inferiority. "Differently Abled" is condescending. It is appropriate to label her "Developmentally Delayed" ("retarded" for the 21st Century), but until when? 20? 30? I'm Developmentally Delayed, because I haven't gotten even a Master's Degree yet, let alone that PhD. that I'm oh so capable of? Or am I?
Everyone's expectations for Emma's are different. Unlike most of us, she has to make her own way in the seeming absence of discipline, peer pressure, and shame. The results are quite a mixed bag. Often, this can be refreshing; it can also range from annoying to dangerous. Life becomes a matter of relativity. Emma's finally becoming aware/annoyed with a wet Pull-up - this is a good thing, and a forward step in potty training. Emma's solution is to remove all of her clothing, along with the offending underwear. It's a blessing with it's own bottom-line.
She is capable of getting into the kitchen, and retrieving food from the refrigerator. She is capable of unlocking both of the 'regular' locks on the front door, and walking out of the house. She deftly exchanges the DVD's in the player in the Family Room. She likes to help, whether it's carrying in a bag of groceries, clearing the table, or rearranging the large glass vase filled with shiny rocks and dried plants on top of the piano. It's hard to discipline her when it feels like she really isn't going to ever grasp that what she's done is wrong; there's so many different kinds of trouble to get into, when your freedom is limited and your environment so full of opportunities. The answer can't be to sanitize her (and our) environment, but it's sure tempting when you're putting all of her clothes and bedding back into her drawers for the 4th time this week. She gets frustrated, but I can't really say that it's any more or less than I am on a daily basis. She gets her feelings hurt - see previous sentence. She forgives. She has compassion. She sees humor, she makes jokes. She gives. She loves. It’s not a matter of purity or innocence, it’s a matter of amplitude. She gets less freedom, because she has less responsibility. The rest of us get to make bigger mistakes, because we can usually pay for them.

We bought her a small, cheap, portable video player for her birthday. I cannot read the instruction manual for it. The type is too small, and it has been translated from an eastern tongue by someone who does not have a firm grasp on at least one of the languages:
"That player has six keys(Key) totally with a to turn a switch. . . No
matter what interface it is under, grow to press the MODE and PLAY/PAUSE key to can target the keyboard or relief to target a keyboard in the meantime."

I can almost understand the sentences above. How does Emma interpret what and how we say what we say to her? How do we all fall into the spectrum of truly understanding each other when we try to communicate? Thinking on these things, most things, is how I've changed over these eight years.

Emma is our daughter – of that there is no doubt. I see my Grandmother in her. She sweeps her hair back with the back of her hand in a most feminine way. She preens. She also likes to load up her fork with spaghetti and dangle it over her upturned maw like a bird eating worms. She likes to go out. She works a large table of diners just like her Grandfather. She likes to kick back in the afternoons and nap with Dad in his chair. She likes a good movie. She tinkers with technology. She often doesn't want to be bothered. She loves to dance.
One of my biggest questions is - if she hasn't already - if and when Emma will realize that she's significantly different than most of those around her. I almost hope that she never does - of course her Dad doesn't want his daughter to feel that sort of pain. My true hope is that if this happens, she'll be able to realize what most of us realize when we feel this way, that there are enough of those people around who love her for who she is, regardless of who she is. That’s the way I felt at the end of this day with my family and friends, celebrating Emma’s life with us. Happy Eighth Birthday, Girl!