This is what a whack job grief makes you. When Andy and I lost our first pregnancy I remember thinking, “If I hadn’t been so concerned about the pregnancy and gone to the doctor so early, if I’d have demonstrated a little faith, this wouldn’t have happened”. And today, while holding our little Ramona I thought, “I bet she was fine before. If I hadn’t taken her to the doctor so many times, if I hadn’t scheduled that echo-cardiogram, they wouldn’t have found this problem and her heart would have been fine. God is trying to teach me something about worrying.”

And I can go further than that in my mind. “If I don’t have faith and believe that she will qualify for the next surgery, God will bring down his corrective hammer and take her.” But I am worried. The doctors say it’s 50-50, I’m worried to death.

You’d think I’d be feeling great today. Ramona is a miracle, the “Praise God!” vibe is gaining ground, we’re using exclamation points, I made martinis. But in a lot of ways I feel worse than I did a few days ago. The adrenaline of the doctors saying she could die at any moment has worn off and I’m just now realizing how exhausted I am. Simon is starting to act up, realizing that I’m not around much like I used to be. Some of the grace that Andy and I have been giving each other because of the almost sacred horror of all this is starting to wear thin.

If Ramona comes home, things will be like they used to be (which I already thought was pretty exciting) except now Ramona will have a serious, possibly fatal heart condition. She may have a long life, or she may have just a few months. And we won’t know. How can you raise a child under those conditions? How can I teach her self-soothing when crying could kill her? What will we tell Simon if she lives just long enough for him to understand that she’s suddenly gone? These and a thousand other worries.

I know God is sovereign. I know that we’ve been prepared in so many ways for this. I know we will make it through. I know that we’ve been blessed even in this (for instance, I decided to start using the fancy soap ‘cuz you just never know). But geez. Today instead of meditating on how strong Ramona is and how her arteries need to grow, I’ve been thinking on how strong we are going to have to be and how much we’re going to need to grow in faith. Today I don’t feel like it. I just want to go back to the way things were.

Which is why I feel like a whack job. I had myself convinced today that her surgery hasn’t really helped her, that she’s just back to how she was. Sick and on the brink of death. We’re so lucky to have such wonderful support, but I’m worried that once our community has performed this miracle of prayer and she’s home, they’ll forget about the quieter agony of “wait and see”. That we’ll start to receive the sort of advice reserved for problems that you no longer have energy or compassion for. That they’ll tell us to buck up. That we’re young. That at least Simon won’t remember all this. That at least we have some extra time.

And then I start to feel lonely and misunderstood. That these problems are too big for anyone to share, the burden of really meeting us where we are is too great. That only God is big enough to talk me through this and I’m not speaking to him right now.

Pray for me, Jane.