Little Miss Complicated

This weekend, in our quest to resume some kind of normal life, we spent time together at our families' houses and enjoyed the warm weather and the joy of all being together. While we swam with Dominic and Cosie we took turns holding Cora or hanging with her poolside. It felt so good to not have to run off or to call the hospital five times a day. Just to all be together and to look around and say, here, here is my whole family.

There have been many happy moments in the past few days -- moments that have felt easy and very dear. But there have also been many moments that have felt horrifying, scary, and very dark. We have been adjusting to the reality that we unfortunately have a very sick, very complicated child.

(This child is also very adorable, very sweet and beautiful, it should be noted.)

But she really does have many, many issues, and although she is home it's becoming clear that we are not on an straight upward trajectory, and we really know so little about what the future holds for Cora or for us. Each day since we've been home Cora has had several episodes of coughing, turning blue, choking, and vomiting. Sometimes one of those things and sometimes all of them at once. She has episodes when her oxygen levels drop dangerously low and we beat on her chest and wait for her to recover. These episodes happen all day long, and I wake up to them in the night, multiple times, every night. We're getting stronger, and we're getting better at believing that whatever episode is happening will eventually pass, but it does take it's toll. Jason and I are both fairly emotionally exhausted, and as you know, emotional exhaustion might as well just take a number and stand in line behind the twenty or so other kinds of exhausted we are.

But right now we're living for the other kind of moments. The beautiful ones. The way Dom and Cosie run over to Cora and lay down right next to her, and love on her. The moments when Cora will start having an episode and Cosie will turn to me and in her concerned voice say, "she's coughing mama," or in the car how, from the back seat, Dom will say, "she's okay mama." The peaceful moments of holding Cora in my arms and feeling that, more than the weight of our heavy life, it's just the weight of my beautiful baby on my chest, very much as it should be.

Today we went to a nearly five hour long cardiology appointment. There were tests and conversations that kept leading to one more test and one more conversation. Cora's heart function still looks pretty decent but they are concerned with her inability to gain weight, to shake this respiratory virus (which she's now had for six weeks), and with how much vomiting and choking she's doing. We now have an appointment with UC's gastrointestinal team for more tests and to see if there is some reasonable explanation for these issues. We also had some blood work done today to rule out other problems that might be contributing.

Complicated! That's the million dollar word. We've been hearing that as a descriptor of Cora for the last seven months. It's the reason for everything. What can anyone say? She's complicated. Little Miss Complicated.

It's easy to get far ahead of myself these days. I just want to look into the tea leaves and read how it all ends. As if that would make living with any of it easier. Between Cora's episodes, her kajillion medications given at a kajillion different times of day, her continuous feeds, her need for suctioning, her desaturating, her oxygen equipment, and then the constant needs of our other two, I've had moments of feeling like, I really cannot do this. That the life I imagined for myself and for us, with our happy family of five, was not anything like this reality. All the pictures I had have been torn up, and there are new pictures, yes, but I'm not used to them yet, and I rather like my old pictures anyway. But there's only so far you can go down that dark and scary road of fearing the cards you were dealt. After a few minutes, you have to come back to the now and acknowledge all the good that is gluing your skittish feet to the ground.

So when I'm done having my little pity party, I dust myself off, slap myself across the face (figuratively speaking), and move on. Because there is simply always the next right thing that needs to be done, and anyway, Jason doesn't like whiners.

I can be all consumed with my fears, and I can sit down on the ground and cry and stomp all I want, because, god dang it, I didn't get my way. But I know enough to know that I will miss the beauty of things if I sit on the ground with my eyes shut. I've got to be available for the possibility that these pictures will be better than the ones I brought with me. I'm pretty sure that's what's going to happen.