Friday, July 15, 2005

two steps forward...

...three steps back. At least, that's what it feels like. The pain is almost more than I can bear, and it isn't even mine.

The price we pay as parents is the loss of a certain sense of control. Before Twinkle was born, we were nearly invincible. My father's death from cancer four years before was a hard blow for our entire circle of family and friends, but we had continued to put one foot in front of the other, and we made it. Before Twinkle, we still had some of that teenage invincibility left in us. That feeling that we might not be bulletproof, but we were *tough*. We could cover anything together, as a couple.

Then, one sunny Saturday afternoon, The Wrench & I left our old world at home, and took off for the hospital. When we drove home on Monday, there were three of us, but it wasn't the celebration we had envisioned. Twinkle was born with a lot of problems; during the required "baby class" at the hospital, the other parents were clearly shocked to see her when we gave our babies their first baths.

Along the way, things have been tough at times. Somehow, some way, we keep putting one foot in front of the other, and our little family of three just keeps on going, and going, and going...

But we live outside "normal". Normal is a place we can visit, but it seems we never get to stay for long. Normal is what we wish for, what we long for, what we try to project. Normal is what Twinkle will never be.

Twinkle is smart - incredibly, magically, wonderfully intelligent. Since Kindergarden, she has consistently been a straight A student - she learns effortlessly, and well before fifth grade she was reading at a college level. She is creative, and funny, and loving - oh so loving - with a tender heart. She loves to read, adores the Harry Potter books & movies, is an avid Radio Disney fan, and as she trembles on the threshold of teendom, she has begun to ask those Questions For Which We Have No Answers. The days that we dreaded since her birth have arrived: She wants to know *why* it happened to her. Why her? Why anyone?

Our answers are pitiful at best. They do nothing to assuage the pain, or to lessen the impending horror of spending Junior High in a wheelchair. They can't hide the braces, don't cover the scars from surgery, won't make her graceful and light on her feet.

They don't comfort us much either.

Sometimes being a parent just sucks.

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