One thing that I can always count on with Maggie is that if something doesn’t go as planned, it affects the entire day.  I was alone with Maggie all weekend and thought going to our local children’s museum would be a fun day – plus they were releasing a bunch of butterflies on this day.  What little girl doesn’t love butterflies?  Before her regression, Maggie used to love this place.  In fact, it was one of the few activities we could count on entertaining her for an extended period of time.  They have some water features and one of her favorite things to do used to be just walking through the water fountains.

Today, and for the last 6 months, she hasn’t cared for these water features, choosing instead to trudge through the mulch – which is by far her favorite activity nowadays.

When we got there I realized I had forgotten her snack bag, including the sandwich I had made for her.  Oops.   Luckily, our friends Leslie and Eric were willing to sacrifice their son’s raisins to the cause.  A hungry Maggie, though, is an angry Maggie.  So she started biting me.  This is one of her mot infuriating behaviors.  Once she’s got you in her teeth, you literally have to pry her jaw open to get her to let you go.  After she was fed, what I’m sure was a disappointing salad, she was in a better mood and lasted until they released the butterflies.  It was a lovely sight and one even landed on her arm.  Well past her nap time and exhausted, she was non-plussed.  Apparently it took a little bit to register exactly what happened, though, since on the way back to the car she couldn’t stop giggling.

And that’s exactly what I planned on.



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2 thoughts on “Butterfly day”

  1. If you can inherit a “biting” gene, Maggie got that from the Klatt side. Randy used to bite me all the time – very hard – so I feel your pain. AJ your blogs are incredibly heartwarming, and it’s clear that your dedication, and Jenny’s, is going a long way in maximizing her abilities. We continue to pray for a cure that will unlock the Rett world for good, and release Maggie and all the precious ones currently in its hold.

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