Smarty Pants

Anna's recent increase in therapies has kept us on our toes, but her growth both physically and socially is overwhelmingly positive. I feel like our trip to Houston was the closing of one chapter and the opening of a new one. Sure, we are still navigating how and when to tell friends and acquaintances about Rett Syndrome, learning how to summarize the diagnosis, and deciding on how much is too much when we talk or think about it. But overall, we are starting to learn this new life, accept it as our new normal, and love Anna as our daughter not as our "Rett girl." I recently signed up for the IRSF's RettNet, a discussion board facilitated by the foundation for parents to ask questions, give answers, and share experiences. The wealth of knowledge has been, at times, overwhelming. I have to constantly remind myself to take a step back and take one day at a time. I hold Anna so near and dear, counting everyday as a blessing. I am able to sweep her up in my arms, and I love that she is this little person full of big personality.

She has become such a little girl in her own right, learning how to better communicate with us more everyday, even yelling back when we tell her "no." The past few days have been marked with new breakthroughs, that to some may not mean much, but to us mean the world. 

The other morning, Gabe was in trouble for not listening and started crying because he lost his trains for a few days until he showed some improvement. (He also told me "I don't like when you tell me 'no.' Stop talking like that." Unfortunately for him, he has been Thomas-free for two days so far.) Anyway, while Gabe was going into hysterics, Anna was in the living room with Alison, our fantastic Occupational Therapist. Alison rushed Anna in for her to see that Gabe was in fact okay, and when I asked her why she brought her in, she turned her around and showed me her face. Anna had tears streaming down her face, so shaken that Gabe was so upset. As if I didn't feel mean enough grounding Gabe from Thomas, that had to go and happen... 

Another morning, Gabe and Anna were both in the living room watching Sesame Street when Anna started screaming. I ran in from the kitchen to see what the fuss was, and asked Gabe what happened. "She doesn't like Mr. Noodle. She thinks he's creepy," he said. I look, and there's Mr. Noodle on the t.v. A few frames go by, and Elmo (her absolute favorite) re-appears. Immediately, the screaming stops, and Anna is all smiles. 

She has also developed the awful habit of biting when she's upset, and the longer the time has gone on since she has started this, the more frustrated and angry I've become. Just the other day she hauled off and bit me in the face, right on my cheek, and let me tell you, this girl's got grip. I was so pissed, I started thinking about what I did when Gabe used to bite when he was a little tyke. I forget who told me, but someone advised, "Bite them back. Trust me, they'll never do it again." It came to that with Gabe, and he never bit again. Why should Anna be different? So I did. I bit her back. How awful does that sound?! Awful, right?! 

But I am learning that Anna's full of smarts and intelligence, and I have to follow through on what every nurse and doctor in Houston told us: "Treat her and talk to her like the age that she is. Baby-ing her will only hold her back." After I (lightly) got her, she looked at me horrified and in a complete state of shock. She could not believe Mama did that to her! Hmm, but let's see... That was 4 days ago... And we have been bite free ever since!! 

Anna's also been manipulating the system, shall we say, when it comes to her therapy times. Oftentimes I have to completely leave the room because if I am there she will put her arms up, make eye contact, and start protesting for me to pick her up. Yesterday when Gladys our Physical Therapist came by, she was visibly upset because Anna was yelling so much and not participating in her exercises. I decided to pick Anna up and be a bit stern with her, and told her word-for-word that Gladys was here to do therapy and she needed to listen because she was there to help her. I felt borderline ridiculous talking to Anna in such adult-speak, until I saw her reaction. She actually started looking between the two of us, first she'd look at Gladys, who shook her head "yes" to positively reinforce what I was saying, and then looked at me with the cutest little pout, almost like "I hear you Mom, but I don't like it." Once I put her down, she quit protesting and did the entire therapy session. It was fantastic. 

So that is quite the sneak peek into all of the great things happening with Anna, and we are taking each day for the gift that it truly is.