bewildered by grace

Hi Bella,

I find myself wanting to talk to you tonight, probably in a way you're not ready for right now. You're so little, and so big, and I'm so lost in all of it. It feels like I've always had you, like there's never been a part of my life when you didn't exist. Sometimes it feels like you're new. Like we just got you home from the hospital a minute ago, and I went to take a long shower and came out and you're three and a half. You really are everything to me, in a way that sometimes even I don't understand, and it's hard to feel what I'm feeling right now and not be able to talk to you about it. Because it's you. It's your story too.

Those two days at Children's Hospital when you were so small feel very, very close to me this week. I remember every second of it. Everything I loved was at stake, and I was drowning. Half of your little face wasn't moving, they said your brain had been compromised. The told me you could have serious seizures your whole life. They were worried about your spine (something I haven't really thought of since that week, and find myself thinking of now), they were worried about your face, then they were worried about your heart. That was the minute I was kicked in the stomach. I remember stumbling down the hall to Cardiology, tears pouring down my face and thinking that the saying, "God won't give you more than you can handle" was total and complete garbage. I'd seen the haunted eyes of a cancer mom earlier that day as her nine year old went in for her third lumbar puncture, a very painful procedure. Her daughter was brave, but that woman looked like she'd been physically beaten. I refuse to say that saying to this day. I don't believe it. Unfortunately we don't live in that world, the one where God is totally in control. We took that control in Eden, and now we live here. Where people get sick, even good people. Where little kids don't leave Children's hospital and their parents stagger home, trying to figure out how to possibly keep breathing.

It's not that I don't know you're okay, not that I'm not more thankful than I can express. The day we carried you out of the hospital into the afternoon sun is what I imagine winning the lottery would feel like. You were going to live, and be totally normal. We've been back and forth to that hospital many times between that day and this one, and you've always done just fine. You're fine. But Tuesday is your first surgery. And that's going to be a hard day for me. I don't want to go back into those rooms. The same pre-op room where I saw that cancer mom, heard her daughter tell the doctor that it was okay, he didn't have to tell her how much it would hurt. She knew. The waiting room where they misquoted me how long your MRI would take and after almost three times the wait I'd been told to expect, we calmly asked to be taken to you immediately, or given a sedative. By that point I was shaking uncontrollably, still not used to you being out of my body, let alone out of my arms.  I don't want to go into the recovery room. Where I had to go find you by myself, last bed on the left, hooked up to all those wires. I could live to be a million years old and never forget for a second what you looked like in that bed, and how it felt to see you like that, and wonder how many more times I would have to see you like that. I know it's stupid, but I'm worried about how you'll look when you're done. It bruises horribly - I've Googled photos. For a week or two it's going to look like you were badly burned or beaten. It will look like a step backwards which is frustrating. When the bruises fade, we'll be able to see how successful the surgery was. I'd feel better if I could go into that room and see you with your mark almost gone, and know that it was so worth it. But it's going to look much worse, and then it will look better.

I know you're okay. I do. It's an incredibly quick surgery, done by a very skilled doctor, in the best possible hospital. You don't even have to spend the night. But I'd like to take a moment and tell you, even if you can't read it yet, that I'm sorry about the IV, that it'll hurt. I'm sorry that we live in a world where we have to do the surgery at all. A world where some people will only see the mark on your face, instead of the incredible person you are. I want you to know that Daddy and I don't see it. We just don't. But we'd like to have it done before you remember it too clearly. As clearly as I remember that first visit. I want this whole experience to get so muddled in your brain, so crowded out by great memories, that one day you look at baby photos of yourself and have to ask us what the mark on your face is.

I love you honey. So much. And the anticipation of the surgery is going to be the worst part. After that, it'll be fine, and you'll be fine. The surgeries after that (they say three or four) will be slightly easier because I'll know what to expect. This time I don't, and I'm a little afraid too. But we will get through it together. And you're excited because we're going to stay at a hotel with a swimming pool and go for a hot tub the night before. Because you're awesome like that. You know about the IV, about everything that will happen, and you're excited for swimming.

Sweet Bella, when I grow up, I want to be just like you.

Mama.