A new reality

I get the question almost weekly "How is Henley?" The majority of the time my response is "She is really good right now!" We are so thankful for the place we have been in recently and have enjoyed feeling like we have finally moved out of the routine chaos we used to live in. While we are not racing to the hospital every couple of months (Thank you Lord!) we do have some different issues to deal with. Migraines.

This week has been a very hard week for Henley. I am posting this picture because people never see Henley the way that we do. Most people see Henley smiling ear to ear and hugging everyone she comes in contact with. She is a happy child. Until she's not. As with most chiari kiddos, when the weather changes so do our children. The pressure in the atmosphere changes and the pressure increases in their heads. It's almost more than they can bare. It's just about more than I can bare too. I took this picture to explain what it looks like to have a "chiari headache" as they call them. Real. Intense. Undeniable. Pain. People ask me what it looks like for Henley to have a "bad day". THIS is what it looks like. 

This absolutely breaks my mommy heart in to pieces. Even with doing everything I can possibly think to do for this sweet baby, sometimes it's just not enough to release the unbelievable pressure in her little head. Rain rain go away!