Baby in a Blanket

The day started off with a bang when Cora, after being up most of the night with her terrible cough, decided to pull her feeding tube out. Jason and I had learned how to place a feeding tube in the hospital back in December, but our skills were a bit rusty.

Let me just set the scene for a minute. We had been getting the kids ready to go see their cousins, but before we left we needed to replace the tube. Kids that are ready to go somewhere and then are halted in their tracks, are dangerous. While Jason and I tried to measure and mark our target destination on the feeding tube, remove the tape on Cora's face and hold the oxygen in place as she screamed and tried over and over to swat our hands away, the kids were engaged in a full wrestling match and taking turns screaming at the top of their lungs. After about an hour and a half we finally placed the tube. This was following a couple of failed attempts, a handful of very stressful color changes for Cora, an episode of Cora's oxygen tube filling with water and spraying into her nose, and about thirteen more screams of either, "Dom pushed me!," or "Cosie won't let me have a turn!"

I seriously wish someone would have been filming it. It could have gone viral.

When we walked into the house this evening after being gone all day, I had the thought that our house had been ransacked by raccoons while we were out. There is hardly a surface here that is not covered by some completely random item that has no business being where it currently finds itself. Right now on my beautiful couch, there is (among many, many other things), a light saber, a bottle of kids hair detangler, Buzz Lightyear, an enteral feeding bag, a cup, a dishtowel, and a little figurine of The Little Mermaid.

Our life is crazy, and I think it's safe to say that our house is reflective of that.

But aside from that and our stressful adrenaline-filled morning, we actually had a pretty good day. We are getting more and more used to living with Cora, and we're getting less freaked out by her episodes. My heart used to stop when she turned dusky in color or coughed so hard she retched. But those things happen multiple times every day, and we are learning how to live with it. Of course I still don't like it, but I know what to do to make it better. I have more faith in myself, and more faith in Cora and her ability to get through these things.

But the best thing that is happening is that we are bringing Cora out a little more. Letting her experience life, and she is carrying her goodness and her little peaceful spirit wherever she goes.

When we were in the hospital back in November and Cora was recovering from her first surgery, she was very sick. At the time, her chest was open, she had more tubes and lines than I could have ever imagined. I remember one wonderful doctor coming to look in on Cora one evening. At the end of the conversation he said, "I have every faith that Cora will get through this. One day she's just going to be a baby in a blanket." That always stuck with me.

I see babies on the street in their strollers or riding in a pack on their mamas, not attached to anything. They seem so free. They're cozy and comfortable and snuggly. You can pick them up any old way you want to; when they're hungry, they eat, and they're just so durable. Cora doesn't have those freedoms. She still relies on machinery; she eats through a tube; you can't lift her certain ways; and she is pretty fragile. But still she has very much become my baby in a blanket. I love picking out her outfits in the morning and playing peekaboo and gobbling her cheeks and toes. We are getting so much of the good stuff now.

Tonight we were at a friends' house and we made her a nest on an overstuffed chair. She kicked around and listened to the conversation for a while, until she got too tired and peacefully dozed off, so cozy, in the middle of all the action, and all our friends, and all the normal life that was there in that living room to be experienced. And she slept through the whole rest of the party. And she's still sleeping now, through getting in the car seat, and through the car ride and the transition to her bed at home. There she is now, in her jammies, with her lion.

And I am very, very grateful.