Living life to the very fullest

It's been a while since I've written a post. As much as I love writing this blog, the reality is that by the time I get everything done for the day and finally get the kids down, I usually have about seven minutes with which I can sit on the couch and actually do nothing (if you count eating ice cream as doing nothing.) I've been taking advantage of that and trying to just relax and know that I'll do the blog when things calm down a little, which they seem to have. Well, I don't know if they've actually calmed down at all but we are getting a little more used to this new life with every passing day, and we have managed to squeeze some normalcy into it.

In fact, we've spent the last several days trying to just be as normal as possible. We've gone to the farmer's market (twice,) gone swimming, spent time with our friends, walked around the block several times, and I've even taken Cora to Target (the epitome of normal for any mom.) These things have been mixed in with the reality of our new life: medications seemingly administered nonstop, daily doctor appointments, and 20 to 30 phone calls every single day to manage some aspect of Cora's care. It really is something. There are calls to the insurance company, calls to the medical equipment providers, calls to the regional center which will help Cora progress with physical and occupational therapies, calls to pharmacies, calls to physicians, calls to case managers, and so many, many other calls. I am drowning in calls.

Yesterday we had our appointment with the gastrointestinal specialist at UCSF in an effort to figure out why Cora has such issues tolerating her food. The physician didn't have a lot of information to share at the time; it was mostly for her to learn about Cora and determine which tests would be helpful to run. She did add another medication which brings our grand total up to, I believe, 13 medications. It is somewhat overwhelming. After the appointment we did the first test, which was a series of x-rays taken with the use of fluoroscopy. This was intended to show if there are any abnormalities in Cora's GI tract. Monday we will go back for another test, and we will see the specialist again in about two weeks.

Other than the incessant medical appointments, one of the main things I've been working on is securing home nursing care for Cora, which would allow me to go back to work in a more full-time way. It has been quite a logistic adventure, and I've learned more about the insurance and medical systems than I ever would have wanted to know. Still, I am making my way through these mazes and we are getting closer to securing shift nursing. It will be such a relief to know that Cora is being well cared for when I go back to work. This has been a great example of trusting the process, and knowing that things will unfold in the way that they should. I can remember spending so many days in the hospital wondering how I would ever be able to go back to work, worrying about who would care for Cora, and about how we would get by if I never was able to leave her. But then one day a few weeks ago, our insurance case manager actually called me to tell me that this service was available to us. We feel so incredibly fortunate to have a solution to all those questions that used to keep me awake at night. (I still stay awake, but I'm worrying about new issues!) If all goes well I will be returning to work in a little over a week. While it feels strange to think of leaving Cora, it also feels somewhat good to think of returning to life as usual and pursuing our effort to make this life the new normal.

But back to the now, and the bright side of everything. The past few days have held some of the happiest moments that we've had as a family in the last seven months. The best part by far was last weekend when we were at Grammie and Papa's house. We had gone up there to go swimming with some of our friends. Dominic and Cosette spent the majority of the day in the water jumping off the side of the pool and showing off their skills as little fishes. But Cora was having a hard day. She was fussy and throwing up a lot, and overall just not happy. Finally it occurred to me that she might just be hot. Or maybe she was bored. I decided to get in on the top step of the pool and hold her on my lap, letting her hands and feet dangle into the cool water. She instantly stopped fussing and I could tell she was happier right away. After ten or so minutes of that I decided we should take it one step further and let her try floating in the pool. Jason held her head and I held her cords and tubes, and she just floated there. She was literally as happy as I've ever seen her. There was a look in her eyes that said she was content and peaceful, and she seemed in her body to be more physically comfortable than she had probably ever been in her life.

I think it's safe to say without a doubt that it was the happiest moment of her life up until that point. Watching her there in the pool kicking her legs, making little snow angels with her arms through the water made my heart so big. It was one of those perfect moments. I felt in that moment that we are doing it right.

And that continues to be what we are going for -- to do things as right as we possibly can, without letting worry shadow our every move. Cora's health is still very poor and she hasn't gained any weight in the last two and a half months. If we know anything about her, it is that she is very unpredictable, very weak, and that her future is always uncertain. We believe her heart and her spirit are strong, that she absolutely wants to be here, and that she is a little girl full of light and hope, destined to surprise people. But we are also realists, and from where we are sitting we can see very little of the road Cora's future will take us down. So we believe the only thing we can do is try to help her live life to the very fullest. All women from age 28-80 will recall the line delivered by Julia Roberts in the movie Steel Magnolias, "I would rather have thirty minutes of wonderful than a lifetime of nothing special." To me, this is a guiding principle, and I refuse to keep Cora in a glass box or to deny her any of the experiences that this wonderful life has to offer.

Most mornings Cora wakes up coughing and throwing up, starting at about 5am. But yesterday morning she had a reprieve and she was sleeping peacefully past when Dominic and Cosette woke up. They both perched up on our bed, with their heads on their hands, leaning over the side of the co-sleeper where Cora sleeps. They were whispering about how cute she is. After a few minutes, ever so quietly, she opened her eyes. There, the very first thing she saw, was her loving brother and sister about six inches away, just staring at her. The very first thing she saw was love.

On all those hospital mornings, it wasn't possible and the first thing she saw was a monitor, or the side of a crib, or maybe just the ceiling. But yesterday, the first thing she got to see was love. And I got to watch it. And I felt like, I won.