I HATE HSP!

Ashleigh's one therapist reminded me today that Ashleigh needs to remember of the things she can do and not the things she can not do.  

We are having a movie night.  We are watching Frozen and Ashleigh is singing every song in this movie.  "Let It Go" is on right now.  I need to "let it go", meaning I need to have hope and faith that our daughter will be okay, but it is so hard to do.  Ashleigh is 14.  14.  I have been worrying about her since she was born. This is different and not what I thought we would have, what we will be dealing with, but I would not trade Ashleigh for anything.  

Frozen is a great movie.  It is about a girl growing up different.  Ashleigh knows how that feels.  She is different.  Why do people think being different is so wrong?  Being different is good.  Why be the same as everyone else? Another reason why I love this movie is Anna will be anything to help her sister, Elsa.  I see this at times with Noah and I pray it continues.  Ethan does not understand what is going on with Ashleigh, but Noah knows.  We can not hide it from him because he is seeing it for himself.

We are seeing Ashleigh's left side getting weaker and she is having more problems walking.  I noticed this change in the last week.  I took the kids out for dinner after Ashleigh's program.  Once we were done there, Ashleigh was having problems walking with her left side dragging behind.  I got the kids into the car then went to the grocery store, but Ashleigh did not know if she could do the entire store so I had Noah wheel her in her wheelchair and I had the cart.  

I hate HSP.  I hate that it is robbing Ashleigh her ability to walk.  I hate that I have no idea how her future will be like.  I need to remember the things Ashleigh can do.  

*loves to draw
*loves to sing
*makes friends easily
*laughs a lot
*loves animals especially Zeus and Bolt
*would do anything for a friend

I will be adding to this list because I need to go.
Night all!
Melissa