The first year of Anabelle's life, the focus was on rearranging our lives around her needs and testing all of her limits to see her potential for reaching milestones. This second year, I have reached a point of comfort with her care, and her limitations have become pretty clear. So I have felt my focus shift to imbibing her life with MEANING. Making sure she touches people, making sure she reaches people, making sure her story MATTERS. Speaking for her, or, as I have always thought of it: letting Anabelle speak through me.
And so I started this blog, we have grasped opportunities to share her story, we make sure everyone sees her for what she is (and what she is not), we let her stand for her special needs friends, we let her be the face of our family.
But it struck me recently: what do I really know about what she would want? About what parts of the story of her life really matter TO HER. At 20 months, even if she were typical, she could not tell me this. I've realized that I am not concerned at all about what mark Elyse's life will make. I don't need to be. She can do that on her own, my only job is to give her a solid foundation. Is it because Anabelle is never going to be capable of structuring her own life? Is it because she will have such a short amount of time TO create meaning? Or is it my own spiritual struggle with the existence of disability at all? That if we were given Anabelle as a test or a lesson, then we had better make sure that lesson is learned?
I don't know. I have no answers, just a million questions that keep me awake at night. I can only do what my heart tells me is the right thing to do by her. And so I share. And I speak out. Do I go too far? Do I overcompensate? Maybe she wouldn't care if someone used the "R" word. Maybe she'd be secure enough in herself to laugh at ignorance. I'd like to think so, but I can only face life with my own history and experiences. As much as I wish I could be in her head, I can only guess.
So, this is Anabelle's story, as translated by her mother. Only she will ever know how faithful the translation really is