At this point, for some reason, Sarah can only fall sleep if I roll her onto her left side and position her with a pillow or two. Also, she does not move at all during the night anymore. This is new. There are so many changes in the past few months, it's hard to adjust. Each change brings about my need to assess for other issues. For instance, her newly fisted right hand means I have to monitor her skin on her palm for breakdown and keep those nails real short. Her lack of movement at night means I am wrestling with whether she needs to be rolled during the night to her other side, but that means she will wake since she doesnt like that side. Plus it interrupts my sleep, which is a very bad thing for me, I have learned. Poor sleep leaves me mentally and physically drained which makes it much harder for me to handle what's happening with Sarah. So for now, she will sleep as she wishes.
This is a really difficult situation, there is no winning here. There is no control, no definite trajectory. My hands are tied as I watch her lose more and more of her abilities all of a sudden. She seems amazingly accepting however, not frustrated at all. She is relaxed and happy, wakes every morning with a big ole smile. For myself, on the other hand, it is very sad. My emotions are all over the place. One day up, the next day down. It's terribly, terribly hard.
I have joined a couple of online support groups and have read a few books on "anticipatory grief", which is what I am going through. I didn't know there was a word for it. The thing is, I just want to stay afloat as she goes down. I don't want to drown as I lose her. I don't want to lose myself as well as my daughter. I want to live on, enjoy my sons and grandchildren, all my family members, my friends too! It's easy to lose friends when going through this kind of thing. Not gonna lie, I can probably be a little depressing at times. But they are hanging in there, for that I am grateful.
Here she is on her second birthday:
And here is my sweet girl now:
