Cystic Fibrosis · Family · Life · Parenting


Kate Bowler is an author I follow. You should read her books, especially Everything Happens for a Reason (and Other Lies I’ve Loved). She asked a question on Facebook today.

If you’re a caregiver, what do you wish people knew?

Well. I had thoughts.

I wrote a comment. I backspaced it away. I wrote a second draft, sent it to a friend for a sanity check, and posted it. And then I realized that I keep meaning to write about this and I never do, and I had just done so, sort of accidentally.

So here you go: a slightly expanded version of the comment I left on that post. Posted before I lose my nerve.

I have a child with a chronic degenerative illness. I have a husband who got sick and nearly died, and now has permanent damage to his leg. What do I wish people knew?

It’s lonely. I don’t want to talk about it all the time because I’m tired of myself and I can’t imagine how tired other people are of me. The fact that I’m not talking about it all the time doesn’t mean that I’m okay.

It’s scary. Our son mostly does well. But any unexpected call from his team, any new symptom could mean that, suddenly, he’s not going to be well. It’s hard not to doomcast. Sometimes it’s impossible. And sometimes my dark sense of humor is what holds me together.

I’m worn down. There’s no cure for my son. He does his hours of treatments at home. We pray for better medicines. We go to the doctor, a lot. We stick our fingers in the dam, over and over and over. My husband’s leg will not get better. He goes to the gym three times a week, doing his best to keep it from getting worse. We hope it will work.

I’m not super strong and I don’t have special powers. I’m doing what I need to do. If you can’t imagine what my situation would be like … imagine harder. Because I’m you, in different circumstances.

I’m not tired. I’m weary. I am weary down to my bones, and it cannot be fixed with a good long nap.

People are, contrary to popular belief, often pretty good in a crisis. We like to fix things. We’re dreadful with chronic. Chronic can’t be fixed; it has to be endured.

If you know someone who is enduring, and you want to help, do this: Pick the worst thing. The one she hates. Cleaning the toilets. Sewing on the buttons. Taking the car for an oil change. Making a Valentine’s box with the children (thank God mine are out of elementary school; I am dead serious about this, it’s worse than spirit days).

Find out what the worst thing is, and do that. Do it more than once.

That sucks, right? I know. But that’s the stuff that wears you down, that keeps you too long in bed, dreading the day.

Maybe you can’t do that. But anyone can do this: You can notice.

You can say, I see you. I see what you carry, and how it bows your back. You can set it down for a while, right here. I’ll stay. And when you’re ready, I’ll help you pick it back up, and go on.

3 thoughts on “Weary

  1. “You can notice.” Yes. It would be SO nice to be seen — really seen. Don’t tell me I’m a wonder woman and you don’t know how I do it. Watch my kids for a few hours so I can take my terminally ill mother Christmas shopping for my dad and give him some time to himself. Take my kids to the park so I can take care of myself for a little bit. At the very least, recognize that I am not different or better than you; I’m just doing the best I can with what I have to work with. And count your lucky stars you’re not in the same boat.

  2. I’m gunna send this right out to a friend who might need to see it and be seen her own fine self. I tried to respond faithfully to a quiet cry for help, but maybe I didn’t do enough to treat the person instead of parsing the request for ways to answer. Maybe this will help more?

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