I already knew that once we came home I'd start to "thaw" again. When we're in the hospital there's no time to feel. I put on my game face. Things change so quickly that if I were to react to everything going on I'd have zero left in me. So I've learned to turn off inside. It's taken nearly two weeks being home for me to start to deal with all the thoughts, emotions and feelings that I neglected before. They're thawing out and being felt for the first time.
I was feeling angry. Angry that we went through the "GI Nueropathy period," where Grace went to the ER six times and we had four inpatient stays in a matter of a few weeks. I was so angry that the doctors turned us away twice. I was so angry that no one seemed concerned that Grace had stopped eating, drinking and pooping and was in pain. I felt so angry that Grace had extra pokes, GI tubes, and vomiting that seemed unnecessary if only we had known the real problem earlier. I've never felt so powerless and scared...and angry, in all my life.
I thought that I was only angry at the ER doctors, but then I realized I also felt angry at God. I wondered why He had let Grace suffer. Why did we need to go through it again when we thought we were past all the hard parts? Why had we felt His presence so closely when Grace was first diagnosed and then He seemed so silent when I was so worn down towards the end?
Then I realized I wasn't just mad at the doctors and at God. Mostly I was mad at myself and didn't realize it. I was mad that I didn't fight the ER doctors more. I could tell things were wrong but I didn't fight to make them do more. Not that I could have changed their minds, but I didn't feel like I tried hard enough. I've heard moms say "you have to make the doctors understand," and somehow I must have failed that. I felt so angry that I didn't do more. Angry that I couldn't do more.
Then I remembered that God had me pray for Grace while I was driving to CHLA one morning. Specifically to pray for that day, that something was going to happen, and He's never told me that before. I had called my family and asked for extra prayer. At the time it seemed like I had misheard because nothing happened at all that day. I had forgotten until tonight that God had told me that. I looked up the date that He told me to pray. That was the week before the constipation began. It takes one week for side effects to start. He had us all praying the day that it began.
I had felt so abandoned by God. Now I see that He knew what was coming and had us all pray to start to put His plan in motion to help her. He hadn't been inactive. He hadn't looked away. I wish that it hadn't been so hard. I wish that I had felt Him even more. But I can't say that He had abandoned us. He was helping us, though His plan was active in stealth mode where we couldn't see it clearly. His plan allowed suffering to happen. But without His plan I wonder if things would have gone from suffering to dangerous. And in fact things were dangerous and I wonder if His plan kept Gracie from worse.
As for my anger towards me, I know that I have to give myself grace. I have to forgive myself for being human. Certainly God has, and that helps. And as I begin to forgive myself for being human, I think I'll be able to forgive the ER doctors for being human too.
I feel like it will take time to heal completely from this last year. It will be it's own journey but I feel certain that God will make us more whole through it. And I hope to come out stronger, more joyful and more trusting in Him.