When it comes to being a mom, I've come to think of this tendency to buck the trend as a virtue, for her sake as well as mine. If I'm held hostage to the idea that our daughter has to have a such-and-such whizbang educational gadget to develop mentally, do this-and-that activity in order to be well-adjusted, or eat in a way that agrees with someone else's self-righteous opinion of early childhood nutrition, then I might as well hang up my Moby right now.
It's a good thing that I'm an obstinate jerk. Otherwise I might've believed that our daughter would be as physically incapable as we were originally told she'd be.
From the beginning of our odyssey to become parents, Jason and I admittedly approached the idea of raising children from similar, and maybe sometimes unusual, points of view. We believed that no matter what our children's abilities were, we would strive to raise them in a home where a balance of joy and structure would reign. No matter who they are, we were both convicted that children need both a functional home that provided a safe and comforting place to be nurtured, and a set of boundaries that would communicate that WE as parents were in charge. I'm a firm believer that you can raise a disciplined child without squelching their individuality or sacrificing the intimacy of a parent/child relationship.
As we learn more about our Ava Leigh each day -- her behavioral tendencies, her personality, the way her physical capabilities affect the way she relates to us -- I have a difficult time seeing her as much different than the daughter I'd originally pictured when I was pregnant. I'll come right out and selfishly admit that when I learned that we were going to have a girl, I dreamed about all of the Mommy/daughter things we might do: do a few local baby pageants, share a pillow with her as i help her make up wild bedtime stories, start gymnastics so she could improve her school recess tumbling abilities, lay the foundation for a music education as soon as she could climb onto the piano bench.....
It's funny how someone can deflate those dreams in a split second with a word like "diagnosis". I've been told many times since Ava's birth to allow myself to mourn those dreams that I have for her. And maybe some day, I WILL mourn some of them. But the part of me that rejected the label of "normal" thrust upon myself rejects the label "disabled" that's been attached to her.
When I heard her responding to her Daddy's voice in a repetitive way this morning, and later again this afternoon as she babbled to our friend Leann, it shocked me to realize that what she was doing was trying to responsively communicate. During this past week since she's had her hernia surgery, she's answered our smiles with her own as she fixes her gaze intently on us. She KNOWS what she's doing. She's holding her head up and wobbling it around like Stevie Wonder as she catches quick glimpses of the world around her before her muscles fatigue and she's face-first in boob again. She's strong. She's determined. And she's aware.
She's telling me that it's safe to have expectations again. Expectations of her victories in life over difficulty. Expectations of her ability to fit in with those around her and interact with them in a meaningful way.
I've recently made up my mind to move ahead with some of the previous dreams I had for her, even if it means we might have to take them a little more slowly and cautiously than previously planned. So I'm gonna find her the floofiest, most cupcakey dress in town and carry my gorgeous girl like a sparkling sack o' taters in the Timberfest pageant this October. And I'm going to keep showing her books and making up much wackier stories to go with the pictures until the day comes when she can make up her own. And I'm going to continue playing the classical music station to her every morning and Paul Simon in the car until she doesn't know why she understands music...she just will.
She can still enjoy these experiences. I can tell that she already does, even this early in her life. It's a talent in itself to be able to enjoy such simple pleasures in life as music or beauty or one-on-one interaction. I've known a lot of very "intelligent" individuals who seemed completely incapable of such enjoyment. Sometimes that individual was me.
But I get the feeling that enjoyment of life is just where Ava Leigh's talents will begin.
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