Today was a long day. We had an appointment with the neurologist, it went okay. What can you say other than that? My daughter is ill, I see progression, her seizures are getting worse, and we have to see a very specialized doctor. He doesn't think her "episodes" are seizures. If they aren't they are movement disorders and there isn't much to treat those. I just want these spells to stop. They are owies and as Mommy it is my job to make that better. I can't do it. No matter how hard I try I am not able to make it better.
I have spent the last few days feeling empty, I felt like God was not beside me. I looked for Jesus everywhere, even in the Word, and was lost. I just felt so far, far away. And then just like that my Father reminded me he is right there. We have crossed paths with a hospice nurse (those people are angels on earth by the way) who took care of sweet, sweet Angel Eli. She is actually going to be our nurse when our own hospice nurse takes a much deserved vacation. She knows the path we're walking, how lost and confused we feel, how frustrated, blessed, all of it. GOD IS SO GOOD!
Right now it is 10pm, Marie and I are up. She can't fall asleep because she's having one episode after another. I am tired. I want her to have peace in a broken body. It's futile here, but I know someday when Marie stands on the "coast of somewhere beautiful" she will know such peace. I just wish I could make it better for a little while.
The wheat is getting closer to being ripe, it's golden but still a little too green. This weekend hopefully we'll begin to bring our harvest in.
I'm going to try to get this baby to bed. Since I know that I have no control and it is out of my hands I find refuge in the Word. Tonight this brings us peace, may it do the same for you.
But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.