Last night at 10 pm, we kissed Rachel good-night and Dave carried her downstairs to our respite worker. Then soon after this I heard Dave yelling for me to get the drugs. At first I couldn't believe it. Really? She had been so happy today. She was just hamming it up for our case worker that afternoon, looking so adorable in her candy cane sleeper. We have videos of her laughing with her daddy. I thought that all three kids were interacting with each other more than usual today too - they were so happy together. A spell was the last thing on my mind at the end of this day. But she was in full distress by the time I met them in the kitchen. We're not sure we have seen her fight one so hard - and this was so incredibly gut-wrenching...her whole body just fighting for a bit of oxygen. Yesterday, it was very hard to believe that she isn't experiencing pain with these - her cry at the start was so desperate, so full of pain.
But after awhile, she pulled out of it yet again. And honestly, I had almost wished for her that this could be it. I would rather that she died like that after a good day, then to go through an agonizing two weeks again. But I guess it wasn't her time. Later, after alot of tears, Dave and I were talking and he said, "Why does God keep pulling her out of these? Why let her recover again and again?" Medically speaking, this is supposed to be amazing. But I can't say that this feels amazing. I desperately want her to be free from these. Sometimes it is so hard for us to understand why God is not taking her yet.
Ethan and Abigail were sleeping when it happened. But the rest of the night was miserable. They each got up a handful of times at different times for different reasons. Nightmares, having to pee, needing water, needing us to pray for them. And I was so restless to begin with, because of Rachel. And I feel disappointed, almost cheated, that a good day can be gone, just like that - and become something else. The thought even crossed my mind that maybe we were under some kind of attack, that we need to pray for God's protection in our house.
Several days ago, I was driving home from the gym and I heard Leonard Cohen's line on the radio, "Love is not a victory march. It's a cold and it's a broken halleluiah." And inside I said, "Yes, that's it. That's how this feels." To borrow a line from a friend, it does seem like we will reach heaven, not in some triumphant fashion, but limping, stumbling our way. The important thing is that God will get us there. He will carry us.