Saturday, December 1, 2012

Far and Away

Today Chad, Danielle, and I left for Yonkers to attend a training for Lu. For anyone that doesn't know, Danielle is Lucy's speech therapist, and also my cousin. She has been working with Lucy since shortly after she turned one. The training we are here for is to teach us to use a communication program called PODD (Pragmatic Organized Dynamic Display). It is a "low-tech" system using eye-gaze to tell us what she is thinking, feeling, wants to do...all kinds of things. I don't even know all of the things that she will be able to tell us, but luckily we have been working for several months on teaching her to use her eyes to tell us yes and no. I think I have mentioned this before, but she can look at us if she wants to answer yes and will look away for no, and she keeps getting better and better at it.

So, Dr. Sasha has invited her patients' families to this training FOR FREE! It costs $10,000 to have the trainer, Linda Burkhart, come for two days and luckily Dr. Sasha was able to get a grant from a Jewish organization to cover most of the cost, the catch being that we couldn't have the training on the originally planned dates because it included a Friday which is Shabbat, so we are having it on Sunday and Monday instead. I am so very excited to learn all that we can, be able to get started as soon as we can, and to help Lucy talk to us.

But I miss her so much when we are away from each other! It's like a part of my body is missing. I was in a near panic this morning when she left with my parents. I do appreciate the time away where I am able to be "off-duty" and just read and crochet or knit, or whatever I want to do, but I guess I love being on-duty, as it turns out. It is hard and tiring, and sometimes extremely frustrating and stressful. Sometimes at the end of the day I am so relieved that it is finally over all I can do is sit on the couch and zone out to sitcoms. But no matter how hard a day is, I LOVE IT! I would not give up being Lucy's mom and spending all day, every day with her for anything in the world, and I miss her terribly right now. I know she is happy and having fun with Grammy and Pappy, but part of my heart is missing when she is away from me and the only thing that makes it easier is knowing that we are here learning something that will improve the quality of her life.

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