So This Is What It’s Like

I am so excited to announce that I have had a run in of a typical nature with Claire and I am so excited to tell about it!!! Tonight I was feeling a little lazy so I threw some chicken in with brown rice and teriyaki sauce for dinner. After a few bites Claire said “want else” and I informed her that this was her only option, that the fridge was empty (not really a stretch). She then said “all done” and I told her no, she needed to eat. As she drank her milk she some how got to the fast food page. Then the order was clear “tomato tomato tomato”. All I could think about was how Judy had talked at length about how when a girl with Rett hits the same thing over and over, she is not perseverating, rather driving a point home. So I go to the fridge and get the bottle of ketchup and explain that it is mashed up tomatoes. She likes it so I add some to the bowl, she eats two bites and stops again. This time she says “small appliance hot” Of coarse, the ketchup was cold, so now the rice was too! So I heat it up and she ate a bit more before saying that she wanted a “cookie”. I was so happy to play her game because it was what I imagine “typical” kids do to their parents. It is a huge relief that Claire’s weight is up a bit so I don’t have to be in the position of desperately needing her to eat, like I have been for the previous 4 years. I love how ironic this device is for me! First I go to great lengths to give everything she says with it meaning so that she is motivated to talk with it. Now I have her commanding me like I am a little toy solider. It took so much work so that now I can do the work of normal life, but it is glorious! The smile on that girls face when she is bargaining with me is priceless and I am so thrilled that she has the ability to do it. I just pray that I can keep that same spirit with Chloe. She is babbling a lot and has three words now, something in my stomach tells me that the next word will be no, not sure I am ready for that yet!

3 thoughts on “So This Is What It’s Like

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