Cystic Fibrosis · Family · Parenting

Seven Chapters In

I’ve been trying to read a book, and I’m having a lot of trouble getting through it. I’m seven chapters in after an entire month.

The problem is not time. Maybe a little, but I’m finding time to read again these days. The problem isn’t the writing. It’s well done, and I am in fact attempting to learn from that as I go along. I actually got to have dinner with the author and hear her speak, and she is a delight. I really want to like this book. I do like this book. I just don’t know if I can finish it.

It’s a memoir of the author’s first marriage, to a young man with cystic fibrosis. You can guess the ending, right?


I brought this home with me the night I met Liz and I kept intending to start it. That was months ago. Many, many months.

I’m in it now, you guys, and it is hammering me.

We have been living for a little while in a pleasant little vale, where cystic fibrosis does not matter much in our day-to-day lives. Sure, we fit in 75 minutes of treatments every day and Levi takes enough pills at breakfast to choke a baby elephant, but that’s just what we do. We’re used to it and it feels normal and on we go, whistling as we work.

This book just terrifies me.

I am terrified of the time that is going to come when Levi leaves my house and I can no longer know for sure that he is doing every possible thing to take care of himself.

I am terrified that he is going to fall in love with someone who can’t handle a diagnosis like this and his heart will be broken. I am terrified that he will fall in love with someone who can handle a diagnosis like this and he won’t need me anymore, and then what will I do? If there’s a future me that doesn’t constantly worry about Levi’s lung function and the future and whether he’s had his enzymes, I’m not sure I’ll recognize myself when I meet me. Someday he’s going to check in to the hospital and it not only won’t be my responsibility to stay with him, it won’t be my right.

Levi in 2012, during a visit to the CF center.

Most of all, I am terrified that the cure is not coming fast enough or cheaply enough or in just the right way for his gene mutation. That all the walking and cycling and fundraising will not have been enough. And this vibrant little voice will be silenced way too soon.


I just can’t stand it.

So I do not know if I can finish this book. I already know the ending, but I don’t know if I can handle the journey. I can’t decide whether this means that I know my limits or I am a sniveling coward, and I don’t want to think about the answer very hard, which is probably answer enough.

Orson Welles said a happy ending depends on where you stop the story. I think, for now, it will have to be enough that our story hasn’t ended. There is still happy in front of us.

And I can decide about chapter eight tomorrow.


One thought on “Seven Chapters In

  1. You have such a wonderful way with words Carol! I love your honesty in this thought-provoking post, and what it must cost you to write this. God bless!

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