By Kari McBride

It started with a quiet “Hmmph” and crossed arms.

Then came the audible signs of frustration. Exaggerated groans. Muttered complaints. Dramatic eye rolls.

In an effort to redirect the moment and calm the storm brewing inside my child, I quickly ushered us outside. But it was too late.

The emotional storm clouds finally broke, with tears, kicks, and screams spilling across the patio. The pain and fatigue of a long morning at summer camp had finally caught up with my daughter.

Another quick change of scenery brought us to the cool, quiet safety of the health center. It was just the two of us now—taking one moment, one breath, one need at a time.

A simple text to a friend, “Can you bring us some water?”, quickly became so much more.

“What do you need?”

“How can we help?”

“I am here if you need me.”

What do you need?

I need her breathing to slow.

I need this pain flare to ease.

I need to catch my own breath.

 

How can we help?

It’s OK. We’re OK.

We have done this before.

We’ll get through it again.

 

I am here if you need me.

No unneeded advice.

No requests for details.

Just quiet understanding from other parents who have lived these moments themselves.

Then came the one thing I didn’t know I needed, because I never thought to ask for it.

A hug.

From another mom who had been there before.

“You are doing a great job, Mom. I just wanted you to know.”

And just like that, the stress of parenting a child with pain—while living with my own pain—felt a little lighter.

I was reminded that I am not alone. Not in my own pain journey. Not in my daughter’s.

I am surrounded by a village of pain parents who understand. Not because they’ve heard our story, but because they’ve lived one of their own.

The Pediatric Pain Warrior Family Summer Camp is the one week each year when my daughter and I are fully surrounded by our people. Families who also live with chronic pain every single day. Families who understand the fatigue, the meltdowns, and everything that comes with them. Families who don’t need an explanation when pain flares, emotions run high, or a child suddenly needs a break.

At camp, we are not the family trying to explain chronic pain. We are simply another family living it. And while that may not sound extraordinary, there’s something incredibly beautiful about finally being in a place where understanding doesn’t have to be earned.

As parents of children living with chronic pain, we have become experts at caring for them. We know where the medications are and when they are needed. We know every breathing and relaxation technique. We know the early warning signs of a pain flare.

But we don’t always recognize when we need help ourselves.

Looking back on that afternoon, I never really asked for help. I asked for water.

Instead, I received compassion.

I received reassurance.

I received understanding.

I received permission to let someone else help carry the weight of the journey.

I didn’t realize how much I needed help. That afternoon reminded me I never have to carry it alone.

—by Kari McBride

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