I heard through the grapevine that it is a holiday weekend. As usual, this holiday weekend is the same for us as any other weekend, with us doing a lot of nothing and staying around the house. Why? It is too difficult to do things that typical families do on the weekends, much less a holiday weekend when those same locations will be crowded and the settings more unpredictable.
Reagan is 3 1/2 and apparently in that stage/age of Rett Syndrome, not much can make your girl happy. I can tell you what definitely does not make her happy, public outings. Okay, maybe that is not completely true because there have been times when we are out and she is perfectly content. But, those times that she is not burns such a hole in your memory that you forget all other positive experiences! Maybe when she is 5 or 6 (which I've been told is the magical age of calmness for Rett girls) we will be able to do more family outings. It will also be easier then because Lauren will be older and more independent and Reagan will have a wheelchair for when she is tired.
So, Happy 4th of July to all and don't worry, we'll celebrate Independence Day in our own way by firing up the grill and letting the girls play in the kiddie pool!
Abby's first visit to Boston for the IGF-1 Trial
3 years ago