Her voice

I have been afraid. I have been avoiding something fairly important because I was afraid and this week I was forced to look at it head on. I have known that Claire’s brain often becomes overwhelmed when she gets the chance to use her talker, it’s a lot physically, mentally and emotionally and often after getting to speak her mind her brain lights up a brainstrom that sends her muscles twitching and takes her breath away. It’s such a high price to pay and I have really struggled to know when is it worth the risk but this weekend it all came to a head. Claire screamed, crocodile tears streamed from her face. She wasn’t overstimutlated or tired, she was sad and mad and she made it clear it was pretty much our fault. Jared was trying to feed her but she wouldn’t open, not even her favorite food would help. It occurred to me that she wanted to talk about it so I asked if she wanted her talker to which I got the  ‘it’s about time you had a good idea’ look. As soon as it was up she made it clear, she wanted to talk. She told us how she wanted to smile and suggested ‘let’s eat dad’ We joked about how he didn’t taste good and she remarked how she liked being funny. That is when we locked eyes and one of those Nemo and Marlin moments. She looked at me as to say, I can do it mom. I thought about the fear of the storm that was brewing inside her head but couldn’t deny her, she wants her voice. I told her I was sorry, sorry for not being better about turning her talker on when we are home. She said sorry to us for her screaming, I was overwhelmed by her charachter, the courage and coordination it took for her to say that melted my heart. I told her that it would change today and she repeated, today. Jared and I talked about the barriers to getting the talker on and realized that when we moved we chose to put the stand to a place that was hard to get to and use. The arm of the couch high and limited her from talking when she sat on it so we decided that the couch had to be replaced. Lucky for me the local furniture store was having a going out of business sale so I was able to find a great deal on a lovely couch that met all of our needs. Last night Jared brought it home and this morning we had her talker ready to go when she got up. What did she say, “love awesome being” I have to admit I love that she’s awesome too. It feels like I am doing the scariest thing in the world, giving her greater access to something that could make or break the world but I’ve heard that often the best things happen when you step into what feels the hardest.

3 thoughts on “Her voice

  1. mj says:

    Love being awesome. That is all sorts of awesome. I love that Claire loves being awesome. And this was a good reminder for us as we look for a new couch this summer! 🙂

  2. Hi Colleen, that is brilliant! I so hope that Jessica manages to a)have such an amazing talker in the future, and that b) she is able to use it as well as Claire…. xxx

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