Tuesday, September 17, 2013

Summers Past

Every summer since Emmy started showing delays had felt like an eternity.

The summer of 2010 I spent every single day trying to get her walking.  Every time we played, I incorporated therapy in some form.  Every trip to the pool, library or park I made sure she was moving.  I remember feeling guilty going to a museum because I knew she would be in the stroller all day...not moving.  Even though I did a pretty good job of pushing the thought aside, I still worried constantly about her and her physical ability.  But, she worked incredibly hard and we were relentless.  She finally walked at 26 months in October of 2010.

In April of 2011, we first heard the words Rett Syndrome.  In May I miscarried.  That following summer, as she regressed, I think I cried every single day.  I didn't have any respite in place because I didn't know how bad things were going to get.  The only breaks I had were when John was home and when she had her hour long therapy sessions three times a week.  Being there everyday, watching her slip away, was heart wrenching.  We were constantly on the go because Emmy was the most unhappy when she was home.  I had it timed to half hour periods.  After a half hour of being home (and never in the family room, always back in the kitchen area playing music) we had to change the scene.  It was an insane pace but she just couldn't be around her books and toys.  It made her too angry.  I think just being in the family room where she used to play would set her off.  I was a complete maniac.   

By the summer of 2012 Emmy had pretty much finished regressing but was still having her fits.  She was just trying to get used to the limitations of her new body. Olivia was pretty tiny so we spent a lot of our time at home.  Emmy went to a summer camp and had extended school year which helped keep her active along with her private therapy sessions.  It was excessively hot that summer so we weren't able to get out a lot.  The pool was pretty much out of the question unless I had someone there to help.  And even when we got to the pool, Emmy would break down and somebody would have to leave to take her home.  I was so grateful when school began again and we had our beloved Mrs. McCarthy, Mrs. Winters and Mrs. McMahon back!!

As I reread this, I guess it sounds pretty doom and gloom.  There were rosey times too of course but this just happened to be a really challenging season of life.  I am glad I'm writing it down.  It makes me realize how much better things are now.  Other Rett families told me it would get better but honestly, I didn't believe them.  She has matured and accepted, as we all have.  She is strong and wise and amazing and so much more. 

And that brings me to summer of 2013... 


1 comment:

  1. My heart broke for you all over again reading this. What a sad and scary time for you all. I can't really begin to imagine what that must have been like-- but thanks to your blog I have a tiny glimpse. I feel like I have learned so much from reading about the Rett girls on your blog and other websites. What beautiful, strong families and such brave girls. Thanks for sharing your experiences. xoxox