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Wednesday, August 1, 2007

Treading Water

I've always maintained that I swim in the sea of pseudo naivety when it comes to Ellie. Because she is an only child, and I spend very little time with other children her age, I often forget that she is developmentally delayed. It's not a case of denial, because I am well aware of the fact that Ellie is disabled and is unable to do many typical-toddler things. It's just that, to me, Ellie IS typical. I have no one to compare her to.

Last week, I was forced to swim ashore the island of reality. I taught music to 125 crrrazy kids for VBS at our church. For the most part, I had a lot of fun, and the chillin' made me laugh.

But, every once and a while, it hit me.

The three year olds are only half a year ahead of Ellie. They were all walking and talking in complete sentences, and singing, and following the actions to each song. All things that are WAY too advanced for Ellie.

The older kids were having a rockin' time, playing games outside and in the gym, and dancing to the music. Their favorite thing to do during our music session was come up on stage and sing with the leaders.

I smiled when I thought of how much fun my kids would have at VBS one day. But, the smile quickly turned into a quivering lip, as I realized how difficult events like VBS are going to be for Ellie.

How will she play duck-duck-goose in her wheelchair? Who will want to pick her for their soccer team if she walks slowly and uneasily with her canes? Will there be room on the stage for Ellie to maneuver up the wheelchair ramp, and get to the centre, where the other kids are? Will she be able to do the actions to songs?

I hate being hit with reality. HATE IT. I like my lala land. I like living in the moment and forgetting that Ellie is different. I like fooling myself into believing that Ellie will be 30lbs the rest of her life, and that no one will think twice if she wears diapers.

I just wish I KNEW, and then I wish I could CONTROL. I want to know for certain what Ellie will be like when she's five. And then I want to be with her at school, at VBS, so that I can control what every child does and says around her.

It hurts my heart to think of what Ellie will be missing. In a world that embraces similarity, I don't want Ellie to be "different". At least not in this way.

I also realize that I look at her life through Chrystie-lenses. I can't imagine a childhood without walking, jumping, or singing (well, okay, I'm not sure how much I actually JUMPED around…). But, that's because those things were MY normal. They will never be Ellie's normal. Can you miss something you've never had?

Additionally, I know that I am underestimating both Ellie and her peers. Not ALL kids are cruel. Not ALL kids tease. Not ALL kids will even care that Ellie's a bit different. I need to remind myself of that.

For now, though, I think I'll throw on my water wings and float back out to sea for a bit. Maybe not to the deep end, but I'll at least submerge my toes. I can only handle small bits of land dwelling at a time.