Making Sense

Because of the most recent move Layla has been assigned a new physiotherapist. Today was our first encounter. I was not excited about starting with someone new, yet again, but she is so great. With many years of experience, she seems very knowledgeable and came with a hands on approach. She was able to pinpoint so many things with Layla. Even moments after meeting her. One thing that stood out in our conversations was on vision. I mentioned to her how not long ago I was looking at old videos of Layla from 0-6 months and the first thing I noticed was how wide eyed she looked. Her eyes were big, open and looking around in wonder. I honestly had forgotten that she ever did this. My memory had been focused on other things, I suppose. All I can remember is how everyone always thought she was sleeping (and still does) because she looks down so often, only out of a small slit. I know for sure I didn't notice the nystagmus (eye shaking) until we were almost ready to go home from the long hospital stay. So I feel like something may have actually caused this to develop.  
The therapist was not surprised by my discoveries. She explained that Layla has closed off and gone inside herself to just survive because she had to. Apparently it's quite normal for children that have gone through the sort of trauma Layla has to react in similar ways. Having so many doctors and nurses coming at her, poking and prodding constantly forced Layla to learn to shut down because she lost control of herself. Not getting proper nutrition for a pretty decent period prior didn't help either. Then it became her new normal. Once it became normal, and with her low tone it became hard to even just open her heavy lids.
No one has ever presented that thought to me. But it totally makes sense. Now the hope is with working alongside the physiotherapist and the vision consultant we will be able to get her more excited about keeping them open. Make her new normal keeping them open again. I'm sure it'll be a long road and no easy feat but the fact that it's a possibility makes me very happy.