Vielleicht, vielleicht auch nicht

I am not sure why, but lately I have been starting to have thoughts in French and German. I remember when I went to Guatemala I started to dream in German for the first time. I think it had something to do with hearing so much of another language that I didn’t understand. I know, it is silly that I live where I do and I didn’t learn Spanish, I really should have. So the question has been, why am I thinking in foreign language, that is so weird! The best I can figure out is that my days are filled with checking for the POS from CCS for the Lite Gait and emailing back in forth to coordinate the ABA therapy as well as hippotherapy. Along with that I am trying to integrate a computer that uses lasers to read glints of light off of Claire’s eyes so that she can have a voice to speak with. Three years ago, I had no idea as to what any of this was. The plan was to love the child that I had. Not worry about if her naps were as regular as another baby or if she fussed a little in public. I really wasn’t worried when she hadn’t pulled to stand by 1. The doctors all told me that she would in her own time. Then all the sudden I wake up and I have a 4 year old and a 1 year old. Chloe can feed herself, but Claire doesn’t have the hand use to do the same. I know that I have been over it a million times, she has a change on the MECP2 gene at amino acid 133 there is a p where there should be an r. They say this causes Rett Syndrome and that it is a debilitating neurological disorder. Somehow, in all of this , she is just sweet little Claire. I am still stuck on how it worked out that I, a classically trained cook who is really good with numbers became the defender of this little girl with such complex needs. Nobody that we work with knows how to work with her. They want me to tell them what to do, how on earth did that happen?!?! Before my mom had her stroke, I had no idea that there were disabled people out there. I knew that old people needed walkers and parking at the front of the store, but that was it. I feel so ill equipped for this. That must be why I am starting to think in German most of the time. Living in Rettland feels about as far away from normal life as Guatemala, granted it could be worse, it just makes my brain hurt

3 thoughts on “Vielleicht, vielleicht auch nicht

  1. I'll second that. You're doing amazing! Starting Claire on that computer at such a young age, and working with all these different therapies. Claire is so blessed to have you! Keep up the great work mama!

  2. I third! Im learning a TON from you. a TON. Think about you every day. Tell all my non rett people about you. you are above and beyond. big hugs.

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