I kind of hate Facebook. I get on it, but it often just seems so trivial. I don't just give it up entirely because I can stay in contact with other parents and professionals of girls with Rett. That is super important to me. I don't post much, mostly just new blog posts. What prompted this post was a realization that came to me this morning while posting a news article on FB that my friend shared with me by another mother of a child with a disability. Anything I post on FB that is not a picture of Lu or sharing a new blog post, almost always has something to do with disability awareness. It's what I write about, it's what I post about, and it's often what I talk about. Is it all that I am? Have I forgotten that there is a world outside of Lucy's disabilities? I suppose some might say yes, but what I say is that accentuating Lucy's ABILITIES within that outside world is almost all that matters to me these days. On Monday we had a tear-free trip to the library. This has not been the case on our past few trips and I literally could not stop talking about it all afternoon. I was just so happy. And while we were there, I started asking Lu if she wanted this book or that book and she said, with her Tobii, "I don't want to do it" and I asked if she wanted to choose books herself and she said, "No". I think maybe she gets overwhelmed with all of the choosing and being out somewhere in public at the same time. So I chose most of them, but still did ask her just occasionally if she thought one looked good, and that seemed okay to her. Nothing is more important to me than helping Lu live in that outside world as easily as she can. So, that day we spent the morning talking about going to the library and prepping for it, we spent the afternoon actually going there, and then I gushed about our success for hours afterward.
Is being Lucy's mom all that is left of me? Absolutely not! I still love to read, and swim, and crochet, and cook, and collect recipes, and attempt to garden. I am still conducting an informal, spread out over many years "research project" on hippies, the 60's, and Woodstock. I have started trying to take a nice bath each Sunday night, and pumicing my feet, just so I can relax and pamper myself a bit (it sure would be better if someone else would pumice my feet for me, but I digress.) I exercise almost daily. I still have my own dreams and goals. But...not one of them means more to me than Lucy, and every aspect of being her mother. And besides providing her with the most exceptional care that I can manage, empowering her as a human with worth is what is at the very tippy top of my list of priorities. And I guess this goal makes me almost obsessively manic about all of the things that will make it possible for her to live a full life.
Is being an advocate for people with disabilities my new identity? Maybe, and I hope so. Is being a communication enthusiast for people with complex communication needs a huge part of my life these days? Yep. Am I a nurse, a teacher, an activities director, a physical therapist, speech therapist, and occupational therapist? I am. And all of these roles are because I am Lucy's mother. Is that all that I am, JUST a mother? It's all that I need to be.