I am really struggling today. It is probably just combination of the lack of sleep and ongoing stress but I am very down. We have had almost 3 weeks of Em sleeping very poorly – in that time she has had perhaps 4 full nights of sleep. The rest of the nights she was awake until 5, 6 and even 7 am. Last night, she sat beside me at 4 am and said she was so tired and wanted to sleep but hurt so much she couldn’t even lay down.
It breaks my heart. There is so little I can do to make her feel better – nothing at the moment, actually. I would give just about anything to make her feel better but I am powerless against her genes. Even a gentle touch on her arm or back causes her pain. I can’t even touch my daughter without causing her more pain. It is so unfair.
And she is grumpy. Not that I blame her – I can’t really understand how she ever even manages a smile, actually. But it is so hard to see her unhappy…
She is so miserable and she holds so much tightly inside her – I know she feels alone. She has many people who love her and care about her, who are praying for her and would do anything for her today. But, moment to moment, day to day, she is essentially alone to battle this horrid condition – no one else can do it for her. I wish I could… but I can’t. All I can do is be here for her, help her, support her and love her through her pain. And cry when she can’t see me.