Saturday, October 26, 2013


My Lilypie ticker is aligned in 2's today. Is that good luck, like when you look at the clock at 11:11?

I have so many plates spinning in my head. This will generally be a logorrhea post. Or should I say blogorrhea? Of course I should! (Sorry.)

Well, I've been thinking about Blue a lot lately. And I'm not sure why that should surprise me. I guess I am surprised at how often I still cry about losing him. I cry about different things, like the way I felt getting the diagnosis or even when I found out both of us parents were carriers. I cry about how Sprout is here and Blue is not. I suppose this is the 2-year anniversary time of when everything felt so utterly hopeless. Then I am amazed that I could have a 1-year-old today. These extremes of emotion are very strange, almost childlike in the way that I can go from sad to happy to sad to happy in the matter of moments. So, I still miss my boy, that's not news.

So here are the things I have been pondering as of late. First, I wonder if there is a moral obligation, not simply a justification, for having an abortion when the baby is unwell. I think about this a lot because medical advancements have allowed the life expectancy of cystic fibrosis patients to soar into the mid-30's. There would seem to be a very good reason to give the chance of living to a CF baby. He could die before age 2 (or earlier), or he could die in his 40's. If you knew you would live to 40, you would still want to live, right? But what if you couldn't live without spending two weeks out of every four in a hospital? What if you couldn't live without dedicating hours a day to "percussive therapy"? What if you couldn't live without taking 40 pills a day, just so you could extract nutrients from the food you were eating? I mean, you would do it, once you were alive. So that is the moral question--if you know what kind of life a person is destined to, and we can all agree that that life is nobody's first choice of how to live (understatement), then is there an obligation to spare that life? Put more simply: you will live a life of physical pain, because you will struggle to breathe; one thing in your life will be certain, and that will be your mortality. If you are not permitted to live, you will never know of it. If you are permitted to live, you will live with the knowledge that your parents knew what pain your life would bring you, but brought you to your life anyway.

Obviously, if you don't know the child's condition until the child is born, then you are absolved of this responsibility for giving the life of pain. I know the problem with this analysis is that we can never know the severity of a prenatal diagnosis. And we can never know what that child would want. Which was the absolute worst part of making the decision I had to make--I would have done what Blue wanted. It was his life. But I was in charge of it. Dammit. . . . I don't wish I hadn't had the abortion. I only wish he were never sick and I never had to make that call.

I have also been thinking about how when you have a medical termination, you have this window of time in which you know your baby is going to die, but he hasn't died yet. I spent a week and three days like this. I remember how Chris stopped thinking about Blue as is if he still existed, but I still felt his every move. One day I was lying on the bed on top of the covers, having already gotten up for the day, and I was just staring at the wall and sobbing. Chris was down the hall in his office, and he came in to say he was trying to work. I don't give him much credit because he doesn't deserve it, but he did not say this unkindly. He took me outside for a walk. There we were in stark contrast--he working, while I was just trying to breathe. That time between knowing what is going to happen, and the waiting for it to actually happen, it is at once agony and a gift. The chance to say goodbye.

As I write this, I wish more than ever that I had held him after he was born. be continued. Mr. E is out with friend tonight and I need to go watch Chopped or something.

Yes, it's been two years, two months, two weeks and two days since we said goodbye. But who's counting? It doesn't really get easier.


  1. I still think of Blue, too, and you. Continuing to pray for your peace and healing.