Tuesday, December 4, 2012


So yesterday we're sitting at the table having breakfast.  Emmy is having her yogurt and bagels.  I only have Emmy's soy yogurt so I tell Ava she can have an applesauce squeezer thing with her bagels instead of yogurt.  As Ava trots back to the table with her applesauce Emmy starts to fuss.  I'm thinking there is some kind of GI issue going on as the eating, drinking, vomitting cycle is uncomfortable for Em.  The fit escalates and I'm trying my usual  methods to calm her down.  It suddently occurs to me that she may be upset that Ava gets the applesauce squeeze and she doesn't.  This doesn't entirely make sense because she would choose her yogurt over applesauce anyday but I start talking to her about it anyway.  I explain why Ava got to have something different and tell her she can have one for a snack later today.   She looks at me, smiles, stops screaming and finishes her breakfast.

There are times I forget that Emmy is 4, that she may want what her big sister has just because her big sister has it.  It is hard to remember what a four year old might say, or want, or do.  Although it can be difficult at times to be with other healthy four years olds, I try to just chat with them.  I try not to get all bitter about what they can do and what Emmy can't.  I view it as a little insight into what might be going on in Emmy's mind.

Yesterday felt like such a normal day.  Yes there was shakiness, hyperventilating and vomit but there was very little CRYING.  I was on and so was she.  I knew the right questions to ask with her cards and how to vocalize her feelings and it put her at ease.  Her body was cooperating and I could tell she was relieved.  She was just more peaceful.  I walked into the family room and she was on all fours trying to remember how to stand up from the floor.  This brought up so many emotions.  Before Rett, before her regression we worked on that every single day.  I would guide her hands forward, take one foot and place it on the ground, take the other foot and do the same and then she would pop her upper body up with a huge smile on her face.  She mastered that skill and spent her days going up and down to get to what she wanted to play with on the floor.  For some reason yesterday her hands were working long enough for her to attempt this again and it made me overwhelmingly ecstatic and devastated at the same time.  I helped her do her feet and she wasn't able to lift her upper body so I helped her do that too.  She turned to me and had that same smile except this time she didn't wander off to play.  This time she leaned in to give me a 'love'.  She can't give kisses necessarily so what she does is lean her head in close to mine.  Such extreme highs and lows, now I know why so many Rett moms are runners.  You have to do something to burn off steam in a healthy way or you'll go insane.  And I don't mean, "Ha, Ha, I'm going insane."  No, I mean curled up in a ball in the corner crying insane.   



  1. Oh I so relate to this post! do I smell a new Boston marathon runner for 2014?? you can take my place b/c Im sure I wont want to do it again!!

    1. Erica, you marathon runners are awesome but absolutley CRAZY! I think I'd be on the curb crying about mile 10 : ) But given my current stress level and the urges I've been having to just run as far away from my house as possible...maybe I will become a long distance runner.