Sunday, June 6, 2010

Our Alien life

As parents of a child with disabilities, we let go of the world most people live in and enter a world apart. One day, all of a sudden, we say goodbye to earth as we know it and go speeding off to a new dimension in the space/time continuum.
This new world is freaky, spazzy, scary and thrilling, and adjustment to it takes some time, as well as some hours of prayer and meditation.
It's a world where a person's success is not meted out in the usual ways. Instead of popularity, straight A's, or winning in soccer, we honor more a drawing of a sunset, a well-told idea that took 20 minutes to get out, a prayer of gratitude, or laughing and crying together. We learn new definitions of what is beautiful, worthy, clever and also what is meaningful. We learn very early not to attach too much weight to other peoples opinions or recommendations concerning our children, and steer sharply clear of those who are easy with the dispensation of judgements. We search out friends and family who accept the fact that we have become aliens. Our deepest bonds are within our own spaceship. Sometimes we do meet friendly earthlings who sort of like the thrill of an occasional Alien encounter...and some of them even invite your child to a birthday party or sit by them at lunch, but for the most part, earthlings cannot see us. We are mostly invisible to them.
In this world, matching outfits and matching words do not matter, pets and animals are just as important a friend as your sister, cleaning your room can mean stacking your collection of Fuze bottles in a straight row,
trick-or treating when you're old, and lots of other exciting twists and turns.

This is a world where you can let go of the idea of perfection and find that it is wonderful to love and be loved for who you are right now- at this moment. We find that even Aliens are children of God. We find in this world that kindness is the most important thing and that just "being" is acceptable. We like living in this new world and would not choose to go back.

2 comments:

  1. Oh Amy! You have such a beautiful way of expressing yourself. Your daughter is a treasure and we love her. Ron and I were talking just lately of how cheerful and positive she is. When we ask how she is, she's ALWAYS great. With the smallest of encounters, I always feel like she's given me a gift!

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  2. so lovely Amy. Thank you for posting

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