Friday, November 19, 2010

No Lone Rangers in this Story

-Invisible disabilities can be such a head game. I got "in" with Children's Develpment Clinic. It's lot's of paperwork . Evaluations are scheduled 4 months out. That doesn't bother me. I'm nervous they are going to tell me that I am making stuff up, and that bugs. I would like someone, besides my husband, to validate what we see.

-She's cute, and charming. And, well, really charming. She doesn't regulate sleep. Or tolerate certain sensory input. She is potty training challenged. She looks for bizzarre sensory input. She has food texture issues. Just because she hears it, or even says it back to me does NOT mean she get's it. She is cause and effect challenged, and has barely perceptible motor delays. Impulse control what? She is impulsive and sometimes jet propelled. It is unsafe to keep her unsupervised for even a half a minute. She loves to be at home, or outside in the mountains. She becomes absolutely UNGLUED in stores. We both have post-traumatic stress after a trip to get groceries. And don't even get me started on what happens if her routine gets goofed up. It ain't pretty.

-At church, we've been talking a lot about what it means to do life WITH. We've been using words like: authentic community, and selfless sharing, and vulnerability. The value of this becomes really apparent as we consider that our daughter may always NEED to do life with others. She's bright, and delightful, but she will NEED someone. The truth is that we all need community, and life isn't meant to be lived in isolation. But the ramifications of my daughter trying to "do it alone" could be disastrous - all the data indicate it would be disastrous.

And so I question why "independence" is a metric for a successful life. For my littlest success will be defined in terms of whether she has the support people and systems in place to become all that God would have her be. And I am convinced she has much to offer the world. But the operative words will be interdependence, and connected, and supported, and valued. There will be no Lone Rangers in this tale - not if it is to be a "happily ever after".

No comments: