Most of my video of Emmeline is in our house. Because, well, that is where we are most of the time. She isn't talking in a cute little girl voice or playing with other kids. She is usually doing something that we have spent weeks teaching her. It's not so much a record of her life but mine. A record of what I have done for the last 3 and a half years. I know that might sound self absorbed and that isn't how I mean it. I know she is really the one doing all the work but being her support staff is intense and exhausting. I go everywhere with her. I am at every appointment and therapy session. Cheering for her when she completes a task or trying to convince her that the task is indeed worth her while. She has a strong will that works for and against her. Mostly for her and against everyone else but that is how she got this far.
My goal for this year is to make her exist in our family as herself. I get stuck seeing her as an endless appointment. In my mind her life is comprised of all the things she needs to do to reach the average. Fix that, learn this, go here, not there, fight, fight and fight some more. The person she actually is is in there somewhere and I'm going to find her. Not to say she doesn't exist to herself or others. This is purely in how I see and treat her. How she exists inside of me. Soon she will not be the medical oddities I see but the spunky Harris/Perkins she is.
And then we will go.