How does she know?

When we were down in Florida, I was asked a question by two separate people that I look up to and admire deeply - “How do you know what she knows? How do you know Evelyn understands all that you say to her?” To be honest, I didn’t know how to answer that question at first because it never crossed my mind to think otherwise, and then it hit me (at 5:30 in the morning after very little sleep), that before Rett officially came into our lives, Evelyn knew it all.

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Before Rett she did all of the typical toddler things. She babbled, she mimicked us, she played with toys, she read her books, she was able to easily follow our bedtime routine (and lead the way), she had an excellent vocabulary, she was able to express her needs (as well as any 1.5 year old can), she would get mad at us for saying no, she would forgive us if we had a disagreement. She was mischievous and would come out of her room after bedtime and try to “sneak” into the living room, as if we didn’t see her walk right past us. Then it all just started disappearing.

Little by little her words went away. We would find her sitting in front of her books and toys just staring at them, unable to coordinate the motor movements to pick them up or use her hands to flip through the pages. When it was bedtime and I would say let’s go brush our teeth and pick out a story, it would take her body 15 minutes to walk the 25 steps from the living room to the bathroom, she could no longer balance on her little stool, hold her toothbrush or ever so carefully pull a single book off of her bookshelf.

I know she is all there because she was always all there. She still is. She never went anywhere. Her words did, her coordination did, her ability to motor plan did, her hand use did. It all went away. However, she did not. She is there.

She may not be able to look at us as soon as we call her name (apraxia is the worst), take a breath in the middle of a Rett episode even when we ask her to, hold her toothbrush when it’s time for bed, request a drink when she is thirsty, go pick out a snack when she is hungry, outright tell us when she is tired or say, "no, I don’t want to do that right now”, but she still thinks it all.

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The way she looks into my eyes when we are working through our day to day life let’s me know that she is very much there. We communicate without her ever having to say an actual word. I have conversations with her all day long as though she is verbally responding. I have expectations of her being polite, minding instructions given and being a decent human being. Her inability to do things for herself or say all that she wants to say in no way inhibits the beautiful mind that she has. She has thoughts she has worries, she has likes she has dislikes, opinions, questions, jokes, snarky comments, back talk, she has Stephen’s, at times inappropriate, sense of humor. She has it all. She just can’t speak these things.

My beautiful girl is stuck inside of a body that doesn’t cooperate with her mind. She thinks one thing and her body either takes it’s sweet time listening or doesn’t do it at all. That does not mean she doesn’t want to. I say all this not because that question made me upset, it simply just never occurred to me that people would think otherwise. 

I have known my girl for every single day of her amazing life. I understand all of her cues and nuances (unless we are having a “Rett day” and I can get nothing right, those days are really hard). I was with her when she spoke her first word and when she spoke her last, I saw all that she could do and saw it all go away, I know her through and through. She is there. She is brilliant. Just look into her eyes and she will tell you it all.

Stephen Fowler