When Daily Therapy Becomes A Battle

By Paint Her in Color Founder, Laura Spiegel

It’s 4:54 PM on a Monday, and I’m looking at photos on my phone. This one always makes me pause. My little girl atop a fallen log with her arms crossed and lips pursed. Her hair blows in the breeze, and a floppy hat covers her shaded eyes. She is at once triumphant and headstrong. I want to wrap her in a bear hug and kiss her salty skin and tell her how proud I am that she is mine.

But I also know… this expression is the calm before the storm. This is when her emphatic “No” is still accompanied by a subtle upturn of her lips. This is before the eyes squint and the cheeks redden and the willfulness fully sets in.

Before she heads into battle…

Oh, my daughter digs her heels in when it comes to combing her hair, brushing her teeth, and the usual six-year-old nuisances. But plaque and tangles are child’s play compared to our highest-stakes battles. I’m speaking, of course, of her daily respiratory therapy. And her refusal to do it.

Every morning and every night, my daughter is supposed to strap on a vest that percusses her lungs and a mask that nebulizes a variety of medications. This twice daily respiratory therapy helps to slow the lung function decline associated with cystic fibrosis. These treatments literally help to sustain life.

So why is it such a battle to get my daughter to do them?

Most days, it takes a solid two hours of negotiation before therapy begins. That’s two hours of me needling, stewing, and generally behaving badly. Some days, this verbal sparring — the offers and denials — the points and counterpoints — stretches to three hours, or four, or five.

The other night, I dipped my toe into fear tactics. I’ve always told my daughter that we do her therapy to help keep her lungs healthy. But after three hours of rejected bribes and pleading and refusal, I lost it. I started talking about missing school. Not getting to dance with her friends. Being stuck in the hospital for weeks at a time.

The whole time I’m saying this, I hear two voices in the back of my head. A psychologist I used to work with reminding me that fear tactics are never the answer. And the future me who regards my words with disappointment and disdain. There are lots of reasons people with CF are hospitalized. Do I want my daughter to be scared shitless when that day comes? Or to think that it’s somehow her fault?

[Sigh].

Earlier this week, my best friend, a mental health counselor, offered two alternative strategies. I could give my daughter something to work toward, like a sleepover or a trip to Party City to get balloons. There is nothing more exciting for my daughter than a shiny, helium-filled, overpriced balloon… I could also give her two coupons a week that act as “free passes.” Twice a week, she can take a pass on either the morning or the evening therapy. I love these ideas because they can help give my daughter a feeling of control.

I share both ideas with her. I try to be cool while I inwardly guess which one she’ll go for. The reward chart? The free passes? Maybe both?

Spoiler alert. It’s neither. She’s hiding under a table, and it’s like talking to a brick wall. “I am never, ever doing mask and vest again,” she declares.

I pause and tell myself to walk away. Raging was not effective last night. Why should tonight be any different? I open my web browser. I Google every variation of everything I am trying to find out. I find zip. Zilch. Zero.

Surely there are studies on motivation and self-care in young children with chronic conditions? I search and search, but the only tip I find is for me as a parent to “remain diligent” with her treatment.

Useless…

I send a text to my husband. Need wine stat. Mama needs some Malbec to help silence the beast. (The beast being me, not her).

The truth is that the choices and rewards and bribes that worked when my daughter was small just don’t cut it anymore. I’m out of tricks, and frankly, I don’t like the person I become when I’m headed into battle. I start thinking long term, I start freaking out, and little of what I say or do is effective.

The other night, I literally found myself tearing my hair out. And screaming like a tea kettle. And being the world’s worst role model for the kids.

I know it gets to my daughter, as well. That same night, she told me that it’s obvious I no longer like her. My heart broke into a million pieces as I heard these words. How can I help her realize that every push and prod is because I love her with every fiber of my being?

I’m scared that we are headed down a slippery slope. And I don’t want to know where it ends.

I abandon my computer and heat up some dinner. I break out the Advent candles and try to clear my head.

My son wants to pray for a little boy who is struggling. My daughter wants to blow out the candles. No one is impressed with my nuked chicken pot pie from a box. It’s a pretty typical dinner, and I slowly feel myself starting to relax. 

One hour later, my daughter decides it’s time to do her therapy. We read a giant book of Disney Christmas stories on the couch. She completes the entire thirty-minute session without a single complaint or pause.

Granted, it’s 8:00 at night, and this is the first of two required therapy sessions for the day.

But for the time being, I’m satisfied. She did it. In her own time and in her own way. I tell her I love her and that I’m proud of her.

But I also know that completing 50% of required therapy isn’t good enough in the long run. Tomorrow is another day with another likely repeat of the exact same battle, and it’s getting harder and harder to tame the beast inside of me.

If you can relate to this, please drop me a note at laura@paintherincolor.com or post your thoughts to facebook.com/paintherincolor. I’d love to know what’s worked for you when it comes to motivating your child to do his or her daily self-care. What hasn’t? Are there specific things that you’ve said or done with your young child that appear to resonate? How honest are you with your child about the repercussions of missed treatments, and at what age do you have that conversation?

To all the other moms and dads out there who struggle with your child’s daily self-care, you are not alone. The fact that you persist in trying day in and day out – even when your tactics aren’t perfect and you feel like you’re failing? That’s evidence of your love. You are good parents. Be strong. Keep on loving on your kiddos.

And remember that no matter how it feels some days, you are not alone.