Learning to Give Myself Grace — Paint Her in Color

By Laura Spiegel

It’s 9:30 PM on a Tuesday, and I’ve had it. I’ve spent close to 12 hours bargaining, bribing, and pleading with my six-year-old to do her respiratory treatment for her cystic fibrosis (CF). This treatment is supposed to happen twice daily. Tonight, it will be a miracle if we can get in the one.

I announce that “I’m done” and head outside to the swing set. I cram myself into the small, plastic holster designed for riders much younger than forty. I swing back and forth in the cool air. Out here, the night is calm.

It’s hard to believe that just a few feet away, a storm is brewing. My daughter is refusing to bathe. Shoes are apparently optional this time of year, and her toes are caked with layers of dirt come twilight. My husband is asking her to choose between the lesser of two evils. A treatment or a bath.

I close my eyes and take a deep breath. My son is now beside me. He’s nine – that age where some moments he looks and sounds like a small child, and others, he’s an observant sage with the wisdom of an adult.

Tonight is the latter.

“I wouldn’t want to do mask and vest either if I were her,” he says, pumping his legs next to me. “It’s no fun, and she has to do it alone.”

“She’s not really alone,” I begin. “We’re right there ---”

“But she is,” he interrupts. “If you think about it, she’s the only one who has to do this. The rest of us get to just sit there.”

He’s right, of course.

“I’d probably pitch a giant fit if I had to do vest,” my son continues. “I’d, like, threaten to run away every day.”

His musings are cut short as a movie soundtrack swells from inside. My husband appears at the back door.

“She’s all set,” he declares. “Movie’s on.”

My kids fall into bed at 11:30, movie finished, 50% of the day’s treatments completed.

I share this story with a friend as she drinks her coffee and counsels me over FaceTime the next morning.

“Your son is right!” she exclaims. “Think how you would be if you had to do treatments twice a day when you were six. Can you imagine?”

I can. An image comes to mind of a photo from around that age. I’m mid-air, pig tails flying, tears streaming down my cheeks. I’m screaming about something – who knows what? – and my mom has had it.

“You’re right,” I admit. “I would’ve been a mess.”

“You need to give yourself – and your daughter – some grace,” my friend advises. “You’re both doing your best. Some days are just harder than others, and that’s okay. You can’t beat yourself up over it.”

Grace. It has many definitions, but one of my favorites from Merriam-Webster is “courteous good will.”

I sit with this for a moment.

Can I give myself courteous good will? Can I do a better job giving it to my daughter when she needs it the most?

I think I can.

I thank my friend for meeting me where I am, yet again. As a fellow CF mama, she just gets it.

“Don’t forget,” she says. “When I talk to you, I’m also talking to myself. I struggle with all this stuff too.”

Later that day, my daughter and I come up with a list of fun activities that we can do together during her respiratory treatments. Writing stories, doing make-up, baking cookies. We come up with thirty-five activities that she can choose to do with me, with her brother, or with the whole family.

Variety, fun, and control are all powerful motivators of engagement for my daughter. For now, this hits on them all.

I can hardly believe it when she proudly grabs her vest and announces, “I’m ready to pick out an activity!”

I know this won’t last forever. At some point, the newness of our plan will go stale. But for now, I’ll take it along with a dose of courteous good will for us all.

We aren’t perfect, but with a little bit of grace, we can do hard things.

And we can do them together.