Saturday, September 29, 2012


I forgot to mention one more totally amazing thing that Dr. Sasha said to us on Friday. It was the last thing she said to us, but let me give you a little background on the comment first. I think I have mentioned Lu being able to use "switches" to do different things such as participate in reading a story, telling Chad about her day, and recently she has been able to use two different ones to tell us if she wants a bite or a drink at meals. Below is a link to see what one looks like (I couldn't get a picture in):|45;d|T1D7aR6LYznIiM:

We have also finally figured out how to use the switches with a special interface that we found to operate "switch adapted" apps on the iPad. So we do a lot with them and Lucy really likes them. Dr. Sasha thought this was great and said we will be able to take what she has learned so far and transfer it to the PODD books which is a communication system that she has invited us to a training on. She also frowned when I said that I bought two switches to use after borrowing two for the summer...she doesn't like it when  people have to spend too much money I don't think!

So, Dr. Sasha came in after Lucy had done the tests for the Tobii and when Iris the evaluator, told her Lucy's scores she said, "Quit buying switches and start saving for college!" To Chad and I that was such a wonderful thing for her to say for the obvious reasons, but what makes it especially wonderful is that just like when she told us about her belief that there will be a cure by the time Lu is 10, she wouldn't say something like that if she didn't truly mean it and believe it to be possible.  And Chad and I feel like even if a cure never comes, going to college is still something that would be extremely beneficial to Lu just simply for the education, but also for the social aspect and any bit of independence that can be acquired from it.  It was just such a wonderful thing to hear!

Since it has taken me over a week to get to writing this, I have told people in our lives about that hopeful comment and a lot of them have laughed, like "Oh haha, good one Dr. Sasha!" But she wasn't joking, not at all, in any way, and we took her very seriously! She had a giant smile on her face when she said it, but we knew she meant it and she was smiling because Lu is amazing and she was so proud of her. Chad and I believe that she can do anything, and because we believe in her so much, she has made such great progress.

I worry often about things such as: the house being messy, needing to clean more, needing to exercise more and lose weight, thinking I should make a little more effort with my appearance, that the dishes should always be done, that I should vacuum more...the list goes on and on. But I'll tell you what, even though I worry about all of those things, they never come first, it's always Lu who wins. I get things done; we always have clean clothes, good food to eat, and the dishwasher generally gets run daily (with help from Chad!), but it is more important to me to take time as much as I can every day, between therapists, to do my own things with Lucy. We work on numbers, colors, ABCs, shapes, coloring, stringing beads, standing, crawling, singing, giving kisses...all kinds of things that are way more pressing to me than all the lame stuff I already mentioned. And that's why she will go to college, with or without a cure.  Seriously.

1 comment:

  1. Julie -take all the time you need to spend with Lu -her welfare, well-being, progress is way more important than dishes and housework and the drudgery that can sometimes be. Look at what you've already achieved and you know that is your answer right there! Stay strong and keep on believing.