Parenting Through Fear

Before I even opened the replacement button, I knew the hardest part wasn't going to be changing it.

It was going to be convincing my daughter that we should.

For nine years, her Mic-Key button has simply been part of our family. Like the feeding pump that hums through the night or the emergency snacks tucked into every bag, it's just woven into the fabric of our everyday life.

Most days, it's uneventful.

This wasn't one of those days.

The skin around her button had become angry. Bright red granulation tissue had grown where healthy skin should have been. It had started to drain and crust over, and every cleaning made her flinch just a little more than the last.

This had never happened before. We are so punctual, hygienic and acutely aware of the value of the button, its role in her health journey, that we never neglect it. But this time we let the fear of what it feels like to change delay the much needed procedure.

It was clear we needed to replace the button, clean the site well, and let it rest before her genetics appointment a few days later.

She knew it.

I knew it.

Neither of us wanted to do it.

As parents of medically complex children, we become accidental experts in procedures. We learn how to change tubes, push medications, manage pumps, calculate feeds, recognize emergencies, and make impossible decisions before we've had our morning coffee.

What no one teaches us is how to help our child carry fear. I didn’t read that chapter in my manual on Glycogen Storage Disease Type 1a. So sometimes the greatest act of caregiving isn't changing the button, it's helping your child believe they can. I needed a fresh idea.

So I sat beside her instead of reaching for the supplies.

"Can I show you something?"

She nodded.

I pointed to the angry little mound of tissue around her button.

"See this?"

"It's kind of like when you scrape your knee. Your body rushes in to fix it. Sometimes it does such a good job trying to heal that it grows a little extra tissue. This isn't because you did anything wrong. It's actually your body trying to help."

She looked closer.

"Right now, though, it's getting irritated. It's kind of like when leaves and sticks pile up in a creek."

She smiled.

"You know how water is supposed to flow through a creek? When enough sticks pile up, the water gets trapped. Everything starts getting messier instead of cleaner."

She nodded again.

"So our job isn't to fight your body. Our job is just to gently clear the creek so everything can flow and heal again."

Then I looked at her.

"I know you're scared."

Her eyes confirmed this truth that her words were failing to proclaim.

That was enough. First we needed to name the challenge. “I am scared.”Now we can go to battle.

Because fear isn't the enemy.

Fear is simply our brain trying to protect us.

I told her something I've been reminding myself of lately.

Fear is like a smoke alarm. It tells us something important is happening. But sometimes smoke alarms go off because we burned the toast.

"Our brains sometimes do that too. They tell us something is going to be HUGE and TERRIBLE..."

"...and then we do it and realize it wasn't nearly as awful as the story we told ourselves."

I asked if she remembered learning to ride her horse without someone holding onto her.

"Were you scared?"

She nodded.

"Did you wait until you weren't scared before you rode?"

"No."

"You rode while you were scared."

Someone once told me that bravery isn't the absence of fear, it's movement in spite of it.

Somewhere along the way, we've accidentally taught our children that courage feels confident, but it rarely does. Courage is usually executed in the midst of discomfort. Through sweaty palms, tears and racing hearts, that is when fears are faced and a new version of ourselves is forged.

So we made a new plan.

Not, "We're changing your button." Instead it was one step at a time, just like riding a horse.

"Let's take one deep breath."

After that?

"We'll clean one little spot."

Then...

"We'll put in the new button."

One step.

Then the next.

I am reminded of the little engine that could. She didn’t say “I will climb this mountain!” She simply said, “I think I can. I think I can. I think I can. I think I can.” And with every thought, she went another foot until eventually the mountain was conquered. I was her mindset. 1% at a time. And if we think we can do 1% at a time, we can keep adding up.

The button was changed.

The site was cleaner.

The appointment would be easier because we'd done today's hard thing and her body could begin to heal properly.

More importantly, my daughter learned something I hope she carries with her for the rest of her life:

You don't have to be fearless. You only have to be brave enough for the next step.

And maybe that's something all of us caregivers need to hear too. Because if we're honest, sometimes we're just as scared as our kids.

We're simply taking the next step together.

Here’s to doing hard things, Cake Pops! Whether you burned the toast or set the building on fire, let us know in the comments if this resonated with you!

XOXO - Chelsea & Amber