Hey Parents, It’s Okay to Not Be Okay

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Laura Spiegel

“I like your headband,” my daughter says out of the blue, bike helmet in hand. “And your purple pants. You look like Superwoman!”

“I feel like Superwoman today,” I smile. “I’m strong, and I can do hard things.”

My daughter nods and zooms down the driveway. A year ago, she would have walked her bike down the small slope with caution. Now she’s learning to ride with no hands.

Hours later, we sit at the dinner table and butter our corn. Kernels spray left and right as my daughter relishes her new front teeth.

“Why do you look like that?” she asks as she munches on another row.

“I guess I’m feeling a little sad,” I respond.

“’About the homeless?” she prompts.

“Um, no. But now that you mention it, I feel sad about the homeless too.” And like a bit of a jerk.

Later, I approach my daughter about doing her respiratory therapy for her cystic fibrosis.

She sighs. “I wish I didn’t have to do mask and vest today,” she remarks. “It’s so hard.”

And it is. Her twice daily respiratory therapy is an essential part of her lung health. But it’s also a nuisance and a reminder of the one part of her that’s different from her friends.

“You’re right. It is hard,” I reply. “And you know what? When you do it, you are reminding yourself that you can do hard things.”

She pauses and smiles, then stretches her arms into her vest. She says nothing, but I can tell that this has resonated. She can do hard things.

It’s late, and I’m tucking my daughter into bed. “I feel left out,” she admits as she pulls the covers tight. She’s lonely because I let her brother sleep in my bed for the last time. Again…

“I get it,” I say. “Sometimes I feel left out too.”

She yawns and closes her eyes. It’s late, and she’s too tired to argue.

Where am I going with this?

Sometimes we parents feel like we have to be stoic for our kids. Impervious to the demands of everyday life, a smile on our face always. When our kids see our frowns and ask what’s wrong, we sweep them under the rug with a “Nothing” or “It’s fine” or “Don’t worry about it.”

We don’t want to burden our kids with our worries, our concerns, our fears. We believe that our bravery and strength give our kids comfort, and often times, they do. Our kids need to feel secure and safe, especially when they are young. They don’t need us to dump the weight of the world on their shoulders.

But sometimes, it is okay to let our guard down. To let our kids know that even though we are adults, we experience ups and downs too.

Just as we role model what it looks like to work hard or to be a good friend, we can role model what it looks like to process emotions in a healthy way. When we express our feelings and label them in an age-appropriate way, we encourage our kids to recognize feelings in themselves and in others. We also help to cultivate a sense of emotional safety – one that allows our kids to be honest with themselves – and to trust that their thoughts and feelings will be treated with the respect they deserve.

As our kids grow, having an awareness of their emotions can help them process how they’re feeling about their health and communicate where they may need additional support. For many, this will be a critical skill as they take ownership of communicating with physicians, asking questions of their care teams, and advocating for their needs.

I’ll be the first to admit that I don’t always do this well. Between COVID-19, virtual school, medical bills that I’m convinced are all wrong, and the general stress of the holidays, I’m not the most pleasant to be around.

I’m a pro at bottling things up and waiting for the proverbial straw to break the camel’s back and blow my cover. I’m calm, I’m calm, I’m calm, I’m calm, I explode! I swore at my kids five times on Thanksgiving. Maybe ten. All before dinner.

I’m trying to get better at this. Taking time for myself during the day helps, even if it’s just ten minutes with a cup of coffee in the morning. So is practicing gratitude. We have a roof over our heads and warm beds to sleep in. Doctors and medicine to help us stay healthy. Friends and family whom we love and who love us.

When I inevitably lose my cool in front of my kids, I also make a point to apologize to them. To remind them that I love them and that I’m human too.

It’s morning again, and I’m watching a lone leaf dangle from the tree. The snow is falling. Maybe enough for a snow angel.

I feel happy.


     Help Others Live STRONGER and LONGER-





Laura Spiegel lives in Indianapolis with her husband and two children, one of whom has cystic fibrosis. She loves a good book, a great glass of wine, and connecting with others who nurture the blessings alongside the battles. Laura is the Founder and President of Paint Her in Color, a web site that offers emotional support to parents of children with special health care needs. She can be reached at https://www.paintherincolor.com, laura@paintherincolor.com, https://www.facebook.com/paintherincolor, or https://twitter.com/her_color.





***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 


***Please speak with your physician before making any changes to your CF management***


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