Cystic Fibrosis · Family · Life · Parenting

Stuck In the Middle

Today as I sit here and write, I’m okay. But I’m going to share something with you that I created when I was not okay.

Last week, I was really upset. We ran into a little red tape with some of Levi’s medications, and it looked like we were going to end up paying thousands of dollars more than we had been/were supposed to have to pay. I was trying to remain calm, the operative word being “trying.” I reached a point at which all of the phone lines I could be calling were closed for the evening and there wasn’t anything productive left to do, and I did not have a good answer. I decided to expend my nervous energy figuring out why I was making end-of-the-world noises about a situation that, while upsetting, was not in fact the end of the world. I made a Venn diagram, I guess because that’s what stressed-out nerds do.

This is a visual representation of my experience as a parent of a child with chronic illness.

I sent it to a few friends that also have kids with different special/medical needs. “I’m stuck in the middle today,” I said. I could have added that I was not okay, but they didn’t need me to spell that out. I asked what they thought I should call the middle section. One suggested “my life.” A couple of the suggestions were not shareable on this PG-rated blog.

I hate the way I react to insurance blips and bad coughs. It is one of the things I like least about myself. I am, generally speaking, a competent person. I ought to be able to manage a prescription problem. I ought not to run around Chicken Little-ing every time Levi develops a cough that requires oral antibiotics. I hate that I cry on the phone to strangers, and to nurses that have been taking these calls from me since Levi was born. Oddly, my Venn diagram helps me understand why I act the way that I do.

I am always somewhere on this chart. Always. I mostly hang out in the green area at the bottom, nagging Levi to make sure he’s getting all the medication in the nebulizer (“All of it, buddy! I don’t want to find a bunch of stuff in there when I clean it!”) and wondering if Paul and/or the nurses and/or the front desk people at the cystic fibrosis center are going to think I’m one of Those Moms if I call again about his cough.

I swing up into the orange section with some regularity. I swing way, way up there when someone well-known in the CF community dies, or when a friend’s child is hospitalized. I bring myself back down out of the orange zone with deep breathing and mindfulness and prayer. Mostly. I land in the orange zone more than I’d like.

So when the blue zone sucks me in with an insurance problem or a medication that the pharmacy can’t get in stock, I’m never just in the blue. I’ve been dragged over and up, and there I am in the middle, freaking out at at a level 9 over a level 4 problem, and hating myself because I’m not a calmer person. The middle of that Venn is a rotten place to be.

I got help with the red tape the next morning. All is well. I’m back in the green zone, flirting with the orange line.

But I’ve been thinking about my Venn. I created it because I was mad and I’m not allowed to throw temper tantrums, but it’s stuck with me. We all have a Venn diagram. Yours has different labels than mine. I hope when you’re in the middle of yours, you can give yourself a little grace. I hope I can learn to do the same.

2 thoughts on “Stuck In the Middle

  1. Wow! I completely understand and relate to your Venn diagram. I felt like you were peaking in to my brain. Thank you for sharing!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.